Meet Robert and Evan   What is ALD?   Robert's 2001 Bone Marrow Transplant   It Runs in the Family   A Typical Day   A Parent's Perspective   You Are What You Eat   How YOU Can Help   Guestbook & Contact Info   Photo Gallery   Make-A-Wish Foundation®   Updates on Robert and Evan   ALD Resources	Robert and Evan's Online Guestbook Remember to hit your browser's RELOAD button to see your comment. Please come back and visit often! Click here to add your message. Hi, I'm one of the parents of ALD boys. My sons just got BMT in Korea. I need advice on when to stop Lorenzo's oil as it is my impression that the doctors here have no idea on that. Have you received any advice from your doctor? Any advice would be highly appreciated. Thank you. Regards, JY JY Lee Seoul, - Saturday, March 20, 2010 at 06:36:42 (EDT) Estimada Familia Hermana: Han sido bendecidos por nuestro señor al permitirles ver crecer a sus hijos sanos, esta terribel enfermedad me arrebató a mi amado Sergio a los 6 años cuando fué diagnosticado y el pasado 3 de abril volvió a los brazos de Dios. El tuvo un trabsplante fallido en la ciudad de México y luchamos contra la ALD durante 7 años. Finalmente perdimos la lucha contra la enfermedad a sus 13 años. Dios les bendiga. Saludos fraternales. MATILDE SAURY VILLAHERMOSA, TABASCO - Thursday, September 03, 2009 at 15:58:47 (EDT) I hope you guys had a very merry Christmas and are looking forward to a wonderful 2009!!! We love you all, LCR Asheville, NC - Monday, December 29, 2008 at 12:18:18 (EST) New pictures for you! We hope you like them. Have a GREAT time at MagFest! Love, LCR - Monday, October 20, 2008 at 15:37:16 (EDT) Everytime I see the picture of Joe and the boys with the paper hats, I just burst into laughter! I know we need to update the little boy pics, but they are just SOOOO cute!!! Now they are just downright handsome! :) LCR Asheville, NC - Tuesday, August 19, 2008 at 11:49:12 (EDT) Happy Happy Happy Birthday Robert and Evan!!!!!!!! We Love You!!!!!!! Thanks for the card and the birthday song! You are really one of the coolest and most fun families we have ever had the good fortune of knowing. We are blessed to have the Helenihi clan in our lives. Robert - 16? Evan - 14? What miracles you both are!!! Love, LCR Laura asheville, NC - Tuesday, August 19, 2008 at 11:45:22 (EDT) Our prayers go out to Lorenzo Odone, who is finally free of pain and rests in God's arms, and to his family, who have done so much in this continuing fight to cure ALD. IT IS WITH GREAT SADNESS THAT WE ANNOUNCE THAT LORENZO ODONE PASSED AWAY MAY 30, 2008, IN HIS SLEEP, AT HOME IN FAIRFAX, VA. WITH BOTH HIS FATHER, AUGUSTO AND HIS LIFE-LONG FRIEND, OMOURI HASSANE, AT HIS SIDE. IF YOU WOULD LIKE TO LEAVE A MESSAGE FOR AUGUSTO YOU MAY DO SO HERE http://www.myelin.org ALDBOYS.COM Every City, Every State - Tuesday, June 03, 2008 at 08:53:01 (EDT) It was great talking to all of you guys yesterday, we sure do miss you tons! Love, LCR Asheville, NC - Saturday, January 19, 2008 at 14:17:46 (EST) Just wanted to drop you guys a line and let you know that you are being thought of today! Hopefully we'll see you this summer - Love, Laura - Monday, May 14, 2007 at 10:48:35 (EDT) Loved the superbowl pics - Evan looks so brave toughing out the rain! Give everyone a big hug and hopefully we'll see you soon! Laura and Christian - Tuesday, March 06, 2007 at 10:05:42 (EST) Hey Gang, Been a while since I've posted a message to you here but thought I'd let you know that you are always in our prayers. Looking back to the time when this journey began, I am so grateful that we have such an awesome God and that he heard our pleas for healing mercy. Kelly, I remember telling you at the beginning that I knew and had no doubt that a miracle would be yours and I am thankful that our faith rewarded in such a big way! I know how hard it has been to always believe it but I am still as sure as I was then that both boys are here as a testimony to the Amazing Grace that belongs to all those who will just believe. Thank you for the increase in my faith that your struggle has given me-sometimes it's easier to have faith for others than it is for ourselves. God knows I would have chosen another way to strengthen my hope and faith than through Robert and Evan's illness if it was in my power to choose, however I am so blessed to have been able to be a witness to the mighty power of God to make a way where there is none. Words fail me now but I think you know what I am trying to say. I am just so glad you all are a part of my life, even after twenty years of friendship and kinship, my love for you and your family continues to flourish! I hope to see you all very soon! Blessings, Angie and the Chitlins Angie, Adam, and Katie Fort White, FL - Tuesday, March 06, 2007 at 09:20:53 (EST) Thank you for taking the time to compile this so that we can all become informed, Only God knows how many people you have helped. God bless you! Joanne Motyl <maysix62@msn.com> Palm Harbor, FL - Wednesday, March 22, 2006 at 05:58:50 (EST) I think this a very informative web site. Most people would find it interesting and touching. Elaine Helenihi-Grandma <george-elaine@bellsouth.net> Spring Hill, Florida - Tuesday, March 21, 2006 at 18:50:30 (EST) It was certainly a joy to see those two briliant young lads on the website. We have been blessed with having them be a small part of our lives. We love them both as family and continue to look forward sharing in their lives as much as we can. Barry & Melanie Barry & Melanie <bmkirby@mn.rr.com> Eden Prairie, MN - Tuesday, March 21, 2006 at 18:48:07 (EST) Hello Everyone. I hope today finds you in good health and great spirits. Phil Lashley Madison, OH - Tuesday, March 21, 2006 at 16:49:10 (EST) Did not see the update. Will look further. Mother Judy Marsan <JPMarsan@att.net> Dunedin, Fl - Tuesday, March 21, 2006 at 12:28:28 (EST) Love you guys! Laura - Tuesday, March 21, 2006 at 11:25:00 (EST) I will pray for your two little boys. Tracy Ryan Boston, MA - Tuesday, August 17, 2004 at 13:09:22 (EDT) Hi guys, thank you so much for the rad BD gifts - the magnet is so awesome and the fossil was a huge hit! We are glad the hurricane didn't hit you, how sad for beautiful Sanibel. Love, Laura, Christian, and Rabon - Monday, August 16, 2004 at 20:41:59 (EDT) I lost my kids 4 months before. I'm fighting for my older one . I have taken many ideas from your website to build mine. Please visit www.ald-leb.com and share your comments in the guestbook . Ziad Ziad Greig <zgreig@ald-leb.com> beirut, lb - Saturday, August 14, 2004 at 16:35:14 (EDT) Hi Boys,A new site for you to look at is aldlife.org,its also got some useful references! chris <cotscot@mweb.co.za> - Sunday, July 04, 2004 at 10:07:53 (EDT) Hi boys,you are not alone in this!We pray that all the powers that be find the answers we deserve! my son wesley is 23 and has contracted AMN in the last 6 months progressing from good health to spastic paraparesis below the arms.He just passed his chartered accountants board exam and has a wonderfull sense of purpose and humour given his condition!I personally will not stop looking for the answers as will those at kennedy krieger!Thanks for the site. chris brookes <cotscot@mweb.co.za> - Sunday, June 27, 2004 at 10:41:01 (EDT) Hello. My name is Evangeline Austin and I am the mother of a special little boy named Elijah. He had a cord blood transplant at Duke Univ. in NC 2 years ago and is doing well. I just wanted to know how your boys are doing now? Thank you for sharing your story with everyone. Evangeline and Elijah Austin <eaustin@midmaine.com> Augusta, ME - Saturday, May 08, 2004 at 20:15:25 (EDT) Have you been informed of the benefits of LOVASTATIN in reversing demyelination? My sister-in-law's two nephews are doing very well on this drug. Pierina Lecce <goldkey@netcom.ca> mississauga, on - Tuesday, April 13, 2004 at 22:03:48 (EDT) The tragic story started last April. My second son suddenly walked cripple.Several months later,he was diagnosed as ALD. Now he can't walk and talk.Even worse my eldest and little son are also high on VLCFA. On recent MRI showed some problem on my eldest son's brain. I read on your web that Robert has done BMT. Could you please tell me more about it? tinchu <tinchu@m1.tgp.ks.edu.tw> - Monday, April 12, 2004 at 03:59:54 (EDT) i saw lorenzo's oil in school today and it touched my heart.so when i got home i imediatly started to look for more info on this disease. i will pray for Robert and Evan. lala <mymycarla> sc - Thursday, March 04, 2004 at 17:06:53 (EST) God Bless your family.I have just recently discovered that this is also in our family. My mom is being tested to see if see is a carrier. I am a female and hope to have children very soon. My uncle has just been diganosed with this and we have lost several cousins to this "unknown".Your page has been very encouraging and helpful...God Bless you all Kimberly - Monday, February 02, 2004 at 20:26:55 (EST) I was so happy to find your web site. It's next to impossible to find someone who knows what ALD is much less has experienced it. My 3-yr old had a BMT last July. He's 180 days out this month and doing great. His web page is www.caringbridge.com/mo/carson. I'll be thinking positive thoughts for you and all the ALD families. Jill Vahldick <vahldick> springfield, mo - Sunday, January 25, 2004 at 00:58:43 (EST) My son will be having a stem cell transplant at Duke in North Carolina in February. Having gone through a transplant yourself you know the helpless feelings that come with this horrible disease. Please remember us in your prayers. Thank you Diane Hancock <dianeh66@hotmail.com> Hanson, ky - Saturday, January 17, 2004 at 15:01:43 (EST) HI , I WANT TO THANK YOU FOR THE INFO YOU HAVE POSTED IN YOUR SITE , ACTUALLY IT WAS VERY HELPFULL FOR US , ESPECIALLY TO KNOW THAT YOU HAVE BEATTEN THIS BAD DESEASE BY DOING THE BMT , I HAVE 2 BOYS WITH ALD , I'M LOOSING MY YOUNGER KID BUT I HAVE A BIG HOPE TO SAVE THE BIG ONE , PLEASE I NEED YOUR PRAYERS , AND GOD BLESS YOU ... THANKS ZIAD & DENISE ziad <denisegr@idm.net.lb> beirut, - Tuesday, January 06, 2004 at 13:21:03 (EST) Missing you guys, and thinking of you as the Holidays come to a close, I hope that your Christmas went well... Tessa Anderson <rmhrefugees@frontiernet.net> Askov, MN - Monday, December 29, 2003 at 19:12:26 (EST) Wow, it took me long enough, I wanted so to let you know that it was good to see you and the boys, I am glad that all is well, and I want you to know that we love you and hope you all will keep in touch, Ali cant stop the Robert and Evan run ons... Tessa and Ali Anderson <rmhrefugees@frontiernet.net> Askov, mn - Friday, December 12, 2003 at 16:15:47 (EST) I am actually known as Grandma and am thrilled to have two such intelligent and loving grandsons. I am indeed fortunate to have been so blessed! Florence E. Helenihi <george_elaine@msn.com> St. Petersburg, FL - Monday, November 17, 2003 at 20:38:16 (EST) I saw the Lorenzos Oil movie and found your story is very inspiring. Mary Vann Buffalo, NY - Sunday, November 16, 2003 at 14:49:53 (EST) Hi everyone, just a quick note to let you know that we love you and are thinking about you. Say hi to everyone down there!!! Love, Laura Laura - Sunday, November 16, 2003 at 13:24:31 (EST) Hi Robert and Evan, My son and I were doing some searching on the web and came across your website. I'm writing writing to send our prayers for both of you. Also that you are our cousins distant maybe but still cousins. My boys names are Derek and Drew Helenihi. The are a few but we all came from the same place. Aloha Bill Helenihi Bill Helenihi <kuilima1@comcast.net> Livermore, CA - Thursday, October 16, 2003 at 22:50:26 (PDT) I was browsing the internet looking for information about this disease because i just saw Lorenzos Oil and wanted to know more about it b/c it seems like a very sad and hard disease to deal with. Reading the history of both Robert and Evan's struggle with ALD is very touching and i just wanted to add to the gestbook that even thought im not related to anyone with ALD (that we know) i will pray for Robert and Evan and for every child that,being so young, have to go through such a sad and struggling disease . All my prayers are with them and their families. God bless you all. Neila Acevedo <neila_02@hotmail.com> - Thursday, October 09, 2003 at 16:48:17 (PDT) I'm a student in medicine school.By chance,I watch the movie Lorenzo's oil.I feel sad and want to know more about ALD.Can you tell me more information about this disease and the way to contact with the Odone family Richy <a7260106@yahoo.com.tw> - Friday, September 26, 2003 at 02:48:07 (PDT) Robert & Evan, you guys are the greatest!!! I love teaching you karate!!! Robert we will work hard over the next few weeks to get you through seisan kata!!!! Your focus is improving and I'm really proud of you. Both of you guys have a special place in my heart!!! Sensei Dean Sensei Dean <dlavas@tampabay.rr.com> Dunedin, FL - Saturday, September 20, 2003 at 11:53:49 (PDT) Hey-I am waiting for results. (Migh be because Collin is two years out in October) We will be going to the U in October--Some whole 2 hours away. Collin broke his arm in wrestling camp this summer-so he had a cast on for six weeks. He starts 3rd grade in two days. Its hard to believe that--my little 8 year old is getting older. Well I hope you had terrific results. Lots of Prayers Deidre & Collin Deidre <DeidreWilmes@hotmail.com> Mankato, MN - Tuesday, September 02, 2003 at 18:11:09 (PDT) Great meeting all of you last week. Excellent website...very informative and well put together. God bless you! Talk to you soon. Steve Sudie and baby Shayla Steve & Sudie Brattli <sbrattli@tampabay.rr.com> Bradenton , Fl - Tuesday, July 08, 2003 at 19:27:33 (PDT) Hi Robert,Evan,Kelly and Joe Our thoughts and prayers are with Robert,Evan and your entire family. Our son Andrew had ALD. He went home to be with God on May 8th. We would like to add Robert and Evans site as a link from Andrews, if you don't mind. With Hope and Love From the Beatties trever <alddad@yahoo.com> dunnville, Ont - Tuesday, July 08, 2003 at 02:08:08 (PDT) i'm doing a research project on ALD, i applaud your family. i watched lorenzo's oil and cried. but, you are in God's Hands, so there's nothing to worry about. God bless. yvette hamer-nel <yvetteh_nel@yahoo.com> cape town, sa - Friday, June 27, 2003 at 04:11:24 (PDT) I too have two boys with ALD. My older son Alek (7), was diagnosed in October 18, 2002. Since then, we have been trying desterately for bone marrow transplant but it was too late. We also tried to get him to Minnesota for immune suppression treatment but even that came too late. Alek also loves Jesus and his drem was to become a pastor to preach God's Gospel to everyone. I believe God loves him too much that he wants him home. We can only thank Him for wonderful seven years He had given us with Alek and we know that one day we will be with him again forever. As for my younger son Justin (5), he will be admitted on June 6,2003 for cord blood transplant at Children's Hospital of Orange County. Justin does not have any symptoms but his MRI did show demyelination. We have been following Robert and Evan's story from the beginning and we will have Robert and Evan in our prayers. We do not know why God puts us in these difficult situations but we do know that our Lord Jesus is with us every step of the way. Thank you and God bless!!! Frank Chung <frankmimi7@juno.com> Corona, CA - Saturday, May 24, 2003 at 13:08:14 (PDT) My husband and I found out that our oldest son Manny was diagnosed with ALD on April 7,2003. His symptoms started about 4 weeks prior to the diagnosis. We were able to find help, and Manny had a stem cell transplant on May 1st at Duke University Medical Center. He is on day +4 and is doing great. We're praying that his body accepts his new cells that he will fight this disease. I'll pray for you boys and please pray for Manny. Melissa Miramontes <MSmiramontes@msn.com> Durham, NC - Monday, May 05, 2003 at 19:14:56 (PDT) My name is susan and i am 21 years old. I have a 2yr old son, Donovan, and he has ald. We found out when sacramento did an amnio when i was 8 months pregnant. Its in our family but we were told that there was probably no chance that my mother be a carrrier. She did have two brothers who passed away from ald when they were in their teens and she had another sister who was a carrier. But our situation is that we recently found out from his endocrinologist at Travis Airforce Base that Donovan has Adrenal Insufficiency and even after all the research i've done, I never knew that there was nothing that doctors could do to stabalize and help the adrenal glands. He has been hospitalized recently because of a flu virus and his body couldn't fight it off because his adrenal glands aren't functioning right. He is on steriods now and also has to take iron supplements for another reason. His neurologist at the base performed an evaluation on my son yesterday and said that he was concerned with his fine motor skills along with ohter things. He has not had much improvment since a yr ago. So they want to do an MRI right away to make sure that everything is normal. So i am hoping for the best. He is already supposed to go to see Dr. Moser at Kennedy Krieger on June 10th and is scheduled to have an mri on the 11th. They are going to accept for the lorenzo's oil and diet grant. Which is ggod news since we found out that Tri-care (military insurance) wont pay for anything that has to do with Lorenzo's oil or the diet. Donovans dad is currently in Iraq in the army so i am a single mother, but I do have the support of my mother and family and friends. I just struggle to go to college, take care of my son 24/7 and deal with my own depression and anxiety ( because of the ald) But i am surviving and i am scared but we will get through it all. I would be interested to hear form anyone who can relate and possibly can give me some advice. Thank You Susan Swaim Fairfield,CA lola20@att.net susan swaim <lola20@att.net> fairfield, CA - Wednesday, April 23, 2003 at 19:41:41 (PDT) hi i'm 13 and we had to watch Lorenzo's Oil in school and then do an assignment on it. I found this site while doing my research and ALD sounds like such a depressing disease but I'm glad that Robert and Evan have such a caring family and that Robert's BMT sounds like it's going well. Life is worth so much. I hope God blesses you in the future, you guys sound like you really deserve it. Nita juanita sydney, NSW - Wednesday, April 23, 2003 at 04:52:09 (PDT) Thank you for keeping a journal through your sons BMT. Our 8 year old son, Sawyer, was just diagnosed after becoming critically ill from the cortisol deficiency which caused his brain to swell preventing the spinal fluid to drain properly. He had been diagnosed with migraines and was undergoing ADD evaluations. He was put into a medicated coma and kept on life support for five days but once allowed to wake up, he rebounded in an amazing amount of time and went home after only a 12 day stay. He played Little League baseball 7 days later and has been going to school all week. He will be evaluated at Childrens Hospital Orange County next week for a Bone Marrow Transplant and we are hoping he will be a good candidate and that ours will be a success story too. We were going to travel to Duke or Fairfield for the BMT, but have decided to stay closer to home and have been comforted that Dr. Neudorf, the BMT director there, will work closely with all of the Doctors that specialize in ALD. It is a relief to know that there are many courageous children and families conquering this deadly disease. Janis Janis Sherwood <janissherwood@cs.com> Vista, CA - Friday, April 11, 2003 at 13:42:06 (PDT) im a mother of a 7yom with ALD. Im an adoptee who after meeting BIO-mother found out what was making my son so sick. jamie barlow <jamies.busy@verizon.net> quartz hill, ca - Thursday, April 10, 2003 at 23:04:39 (PDT) Priase God! I have been attempting to see how Robert was doing in the last couple of months and began to pray hoping that everything was fine. And I see today that he is doing good. Again, my two boys have been diagnosed with ALD and does my heart and spirit exceedingly well to know that Robert and Evan are doing fine. We take my five year old up to Kennedy Krieger in a couple of weeks to get him registered for the Lorenzo's oil program. Thank you for updated your site. I can't explain it, but it gives me hope. I thank God for you and your family and pray that He continues to give you strength! Morshe Araujo <MystiBleu73@aol.com> Biloxi, MS - Thursday, April 10, 2003 at 09:56:28 (PDT) I just found your web site and have read through a little portion of it. My boys have ALD as well. I have 3 sons, 2 have ALD. We are from Indiana and decided to come here to Minneapolis for help. My middle son is +1 for transplant. I have heard the worst is yet to come. We are praying he will not have to many side effects. He got a bone marrow transplant from his younger brother age 3. Unfortunely, we did not know anything about ALD. It was brought to our attention because our oldest son age 9 was having hearing, vision, speech, and school problems. After evaluation we were told that a BMT would not be good for him and possibly kill him. He is now undergoing an experimental treatment run by Dr. Charnas. He started 3 days ago. It is very sad for us to watch a perfect little boy go down hill like this. It has been the hardest thing of our life. We are praying that this treatment will work and that God will provide a miracle for him. Thanks for your web page and you can email me if you wish. God Bless you and your little boys!! What a blessing.. Christie Smith Christie Smith <donsdumpling@hotmail.com> Minneapolis, MN - Friday, March 21, 2003 at 12:27:51 (PST) i am so filled up with happiness for your family, i can hardly contain myself. The only exposure I've had to ALD was a very close family. Their son, Tyler, started to deteriate around the age of five and died last year at ten. I am joining your prayer group for your sons Robert and Evan. May God continue to bless you and your family. katie shanks <ktyxess@charter.net> swansea, il - Tuesday, March 18, 2003 at 12:45:12 (PST) That is wonderful news. I have checked your site every since you went to the U. I am so glad everything went well. I too got to see the RMH, it is looking great. We went to the U in April. Everything looks great for Collin too. He is 100% engrafted, and still at the low end of sup. for his IQ tests. He is really beginnig to hate beeing locked up. He is down to 6 weeks left in the tapering. We began in the beginning of April. We have to go to the U on Monday, because we havent had his blood drawn. I am so excited for your good results. Remember all they need is the enzyme. Keep updating, I love reading good news! God Bless each and everyone of you. Deidre <DeidreWilmes@hotmail.com> Mankato, Mn - Thursday, May 02, 2002 at 13:25:23 (GMT) I saw lorinzo's oil five years ago and ever since then I have tried to keep up with the research. Although I don't know anyone with ALD my heart goes out to the families of the children who do.I am only 19 and this disease has literally broke my heart. To all the families who have struggled... "Keep hoping. God has a will and a way for all of his children.Dreams do come true!" ashley romine <ashndave@att.net> baton rouge, la - Monday, April 29, 2002 at 15:27:13 (GMT) Hey there, I'm 15 yrs old, and today I had watched "Lorenzos Oil" at school and it really touched me. Starting a few hours ago I have began researching ALD and the more I know about it, the more I know I'll be able to understand it and help others with it in the future by volunteering for the needy. I hope the best for your boys and I know God will bless them with a better and brighter future. I'll pray for your boys today with love in my heart. Good luck and God bless. ;) Veronica Torres <TospsieTurvieMind@hotmail.com> Vista, CA - Saturday, April 27, 2002 at 01:21:48 (GMT) Hi My sisters son got the ALD diagnose yesterday. Fredrik is 11 years old and the doctor said it has gone quite far. We are all in kind of shock. His yonger brother will now be schecked. Thank you for your pages. I will send Robert, Evan and Fredrik the best thoughts and feelings I can. God Bless!! Petter Petter Elind <petter.elind@nordverk.no> Oslo, - Thursday, April 25, 2002 at 10:32:10 (GMT) I honour your courage and give you my heart felt prayers for your struggle to find a cure for both this disease and for both of your sons. I am so pleased that progress is being made. My husband had Aplastic anemia and the advances that can be achieved through bone marrow transplant are truly hopeful. My prayers for all of you! Kathryn Kathryn Birks <kathrynb1@hotmail.com> Calgary, Alta - Thursday, April 11, 2002 at 01:17:39 (GMT) Kelly, I am currently writing from Duke Univ. Medical Center where my son, Elijah Austin is undergoing a BMT using Unrelated Cord Blood. He is the first ALD Boy to come through here that is asymptomatic. Our website is www.caringbridge.com/me/elijah We are day +12 and he is doing really well. I love your website and find it refreshing to read about another family who has undergone similar expierences. Vange Austin Evangeline Austin <eaustin@midmaine.com> Augusta, ME - Wednesday, April 10, 2002 at 05:23:57 (GMT) Tuesday, April 9, 2002 After researching ALD for a university assignment, I stumbled across your website. Please let your boys know how courageous they are. My prayers are with you. Sincerely, Rhea (18) Rhea Psereckis <rpsereckis@latrobe.edu.au> Bundoora, Vic - Tuesday, April 09, 2002 at 09:58:18 (GMT) Hi, I'm a 16 year old girl who also stumbled here after watching "Lorenzo's Oil" in class. You, along with all other ALD-affected families, are in my prayers. God Bless, I'll be back for updates =) Christy <sunburstcg@hotmail.com> Schaumburg, IL - Monday, April 08, 2002 at 19:31:51 (GMT) I am a 16 year old, who after seeing "Lorenzo's Oil" in my biology class and at home, became curious about ALD. After looking for research on it I came upon this website. And I pray for Robert and Evan. LaKeshia Jenkins <kimani_04@hotmail.com> St.George, SC - Sunday, April 07, 2002 at 04:40:36 (GMT) Our prayers are with you. All things work together for good for those who love Him and are the called to fulfil His purposes. Anonymous Nashville, TN - Saturday, April 06, 2002 at 17:45:35 (GMT) You guys are always in our thoughts and prayers. We're headed there this weekend for a visit, be there about a week or so. I can't wait to give those two beautiful boys a big hug! And you too Kelly. I wish I could nominate you for Mother of the Century with all you've been through. Keep the faith and it will never let you down. LOVE, Laura & Christian - Saturday, April 06, 2002 at 01:27:56 (GMT) Hi there. I'm a sixteen year old girl who after seeing the movie 'Lorenzo's oil' wanted to find out more about ALD, and so I stumbled upon this page. I have been staying up late reading the updates on Robert. I just wanted to say I am so happy that things have been working on so well and I hope it continues to do so. I will keep Robert and Evan and your whole family in my prayers. God bless ^_^ Meghan <allanah@kodocha.zzn.com> Toronto, ON - Monday, April 01, 2002 at 06:33:16 (GMT) Our prayers are with you. Larry and Kim Wheeler <kimhw@umich.edu> Whitmore Lake, MI - Monday, March 25, 2002 at 18:50:46 (GMT) Our prayers are with you and the Conklins. Larry and Kim Wheeler <kimhw@umich.edu> Whitmore Lake, MI - Monday, March 25, 2002 at 18:49:43 (GMT) To all the Helenihi family, I missed seeing you at church this morning. Myrtle (Honey) told me that you were there this evening and that you had just been out of town. I hope that every thing is going well. We are to pray with faith , believing. Sometimes easier said than done, I do continue praying for all of you and I know that God will keep you in His care. God bless you all!! Chuck Chuck Booth <Booth@tampabay.rr.com> Dunedin, FL - Monday, March 25, 2002 at 00:31:56 (GMT) Hello Kelly, Thank you for having such an informative website about all aspects of ALD. On March 5, 2002 my son, Wyatt turned 7. A week later we received the news that his VLCFA test was positive. We are still waiting on the DNA results. My friend, Marguerite Crespillo, forwarded your website to me. She and I met at the start of the school year, and after hearing my plight of trying to figure out what has been wrong with Wyatt since he was two, she suggested I get the ALD tests done. None of the doctors believed he had this disease and I had to insist on the tests right down to the last one. Even after getting the positive VLCFA test, the neurologist said it was nothing more than a "red herring". Needless to say, my faith in doctors is near non-existent. On Monday, Wyatt's acupuncturist is having him see her teacher who is a doctor from Japan. Have you explored treatments outside of traditional Western Medicine and if so can you shed any light on what has been helpful and what has not? I know I have much reading to do, but one of my big questions is why is everyone still using the Lorenzo's Oil if they've concluded it does not work? I'm also wanting to know how much other parents have told their children about the seriousness of this disease. Right now, Wyatt doesn't have any idea. I know you must be overwhelmed, but if you can refer me to any information that would answer my questions, I'd appreciate it. Thank you. Sincerely, Diane Zmrzel (916)645-0444 Diane Zmrzel <diane@bzplumbing.com> Lincoln, CA - Sunday, March 24, 2002 at 00:25:19 (GMT) Dear Helinihi Family, My nephew Shawn has recently been diagnosed with ALD. He is 10 years old. The entire family is devastated. We can only go on with courage and faith that someday this awful disease will have a cure. My husband is soon to be tested since it is running on his side of the family. Pending these results, we will find out if my daughter (who is also 10) is a carrier of this disease. (I pray she is not). I anxiously await further news on your son and hope and pray all is well. God Bless! Jackie Green <brdluvr@speakeasy.net> Farmington Hills, MI - Friday, March 22, 2002 at 22:46:42 (GMT) Hi Kelly, I am very glad to read that your son is doing well. I will continue to keep him and your family in my thoughts. My = son Jordon (www.jordonfund.com) died in 1999 from ALD. We also went = through the BMT promise but unfortunately it didnt work for Jordon. We = also have a 5 year old son Jon who has the disease and a 7 year old son = Jake who is negative (thank god) but he was the donor for Jordon and is = a perfect match for jon should he need it. A good friend of ours son = Wyatt just tested positive and we are hoping they have made some = progress since Jordon died. Anyway, i have wanted to send a note for = awhile and finally was able to do so. I would enjoy hearing from you = when you have time. I know that is in rare commodity right now. My love and prayers go out to you and your family.=20 Marguerite Crespillo Marguerite Crespillo (Jordon's Mom) <marguerite@realty1st.com> Lincoln, CA - Friday, March 22, 2002 at 04:36:16 (GMT) I think about you all often. How are things going? I hope everything is well. We are still doing very good. He can hardly wait to have his hickman pulled on April 1st. If you asked Collin what the worst part about the BMT was he would say doing the salt water in the hospital. I hope you get a chance to update your site. You will be in our prayers. Ald is a very nasty disease and I hope someday soon they have a cure. In Gods Hands, Deidre & Collin Deidre Wilmes <DeidreWilmes@hotmail.com> mankato, mn - Sunday, March 17, 2002 at 14:50:54 (GMT) To the Helenihi family, MAY GOD BLESS EACH ONE OF YOU. I got your web address from a friend of mine whose loving young son was just this year diagnosed with ALD. My heart just breaks for him and you. My thoughts and prayers are with all of you. God Bless Robin Dimo <RRD0218@aol.com> Ann Arbor, MI - Sunday, March 17, 2002 at 04:03:43 (GMT) God Bless you Robert and Evan you will be in our prayers. A co-worker of mine has a son with the same disease. I am just learning about this and will be a regular visitor of your website. Thank you, Cathy Cathy Recto - Saturday, March 16, 2002 at 22:15:16 (GMT) Hi remember me? We met on 4a when I was visiting there. I have been keeping up with your son and I am glad to hear that he is back doing well. I will keep praying for him and with some luck and a lot of prayer he will do fine and have a normal happy life! Jeff Shannon <FireMedCop@aol.com> Ft Lauderdale, Fl - Friday, March 15, 2002 at 19:48:12 (GMT) I am so happy to see that Robert is out of the hosptial. I think of your family every day! Sue and John Conklin <webstersc@earthlink.net> Whitmore Lake, MI - Tuesday, March 12, 2002 at 02:04:30 (GMT) Robert. It was really good to see you in church and even better to hear you sing. Just wanted to tell you did a real fine job. I'm glad your hemaglobin is up and we are praying that it will go u even some more. I always pray for you and Evan and yourMom and Dad. Chuck Booth Chuck Booth <Booth@tampabay.rr.com> Dunedin, FL - Wednesday, March 06, 2002 at 18:15:54 (GMT) What a wonderful and informative web site. I thank you for sharing your experiences with us. I recently have had the opportunity to meet Evan at AWANA. What a wonderful little boy. What courage and faith it takes to endure this desease. We can do all things through Christ which strengthens us. God Bless. Chris and Rebecca Piatt Rebecca <Becca@piatts.com> Palm harbor, FL - Tuesday, March 05, 2002 at 03:13:24 (GMT) Dear Robert, Collin, my son will soon be entering his six month. His six month check up is April 1 and 2. His actual 6 months is April 11. Our prayers go out to you for a speedy recovery. I know it is very hard to stay at home all the time. Collin would so like to go play in the snow. Keep us posted and we will keep you posted in our prayers. Collin and Deidre Deidre Wilmes <DeidreWilmes@hotmail.com> mankato, mn - Thursday, February 28, 2002 at 14:55:44 (GMT) Joe,Kelly.Robert and Evan, Just a note to tell you we remember you all in our prayers. I hope Robert gets out of the hospital soon and that your hemoglobin is back up where it belongs. God made us and we believe He can fix us. May God bless you all real good!! Chuck Booth <Booth@tampabay.rr.com> Dunedin, FL - Monday, February 25, 2002 at 14:33:06 (GMT) Hi, my name is Eric and I am greatly touched by your story and what your young boys are going through. I am currently going to a private christian school and in the bio. class we are studing the effects of ALD. It is hard to think about something like this on an unpersonal point of view having not known anyone that has gone through the things that you have. I will make a point to pray for you faithfully in hope that your boys will find constant peace and hope in God. Your friend in Christ Eric Eric <sgtkingt@juno.com> Ks - Friday, February 22, 2002 at 04:14:41 (GMT) I am heartbroken every time i see a picture or hear a story about a young boy somewhere who has ALD. I have seen the movie "Lorenzo's Oil" and that also had an effect on me. Bless your hearts. Chrissy CA - Tuesday, February 19, 2002 at 02:31:49 (GMT) May God Bless all of the families that have ALD children. May you hold strong and never give up hope. Marissa <boxerbabe_01@hotmail.com> Villa Ridge, Mo - Thursday, February 14, 2002 at 21:21:57 (GMT) Our 10 year son has recently been diagnosed with ALD. We are considering the bone marrow tranplant option and we are scared. Our thoughts and prayers are with you. Our youngest son will be tested next week for ALD too. Sue & John Conklin <webstersc@earthlink.net> Whitmore Lake, MI - Friday, February 08, 2002 at 02:04:35 (GMT) Hi Joe, Kelly, Robert, and Evan! I miss all of you guys and I was searching through the web and I found your website. I have been praying for your family and I hope that the bone marrow transplant will continue to be successful. If you happen to come back to Minneapolis, please stop by Tairrie House and Stadium Village. Blessings, John John Hartono <hart0508@umn.edu> Minneapolis, MN - Sunday, January 27, 2002 at 23:26:30 (GMT) Dear Mr. and Mrs. Helenihi, I viewed the movie "Lorenzo's Oil" for the second time in eight years. At the time I first saw the movie. I did not feel the it was very moving. I had recently bourne a childe with Prader- Willi Syndrome and I guess I had no sympathy to share. However, my son is now eight years old, and enough scars have healed for me to allow myself to feel for others. At the time of my son's birth, my mother, who had lost two children in infancy, had me convinced that it was much easier to lose a child at birth than to have them survive and be seriously disabled (her own sister had died quiet early of MS), because you could at least grieve the loss and then move on. When my son Kerrigan was born with Prader-Willi Syndrome, I distinctly remembering telling her that she had been wrong all these years. I told her that yes, I was mourning the loss of a "normal" baby, but I also had a warm little snuggly body in my arms while I did so. Throughout the following years it has crossed my mind (on extremely rough days) that maybe she was right. Even so, I wouldn't change it for the world! I praise God every day for the family He has blessed me with. He knew what He was doing when he gave us Kerrigan, even if we haven't figured it out ourselves. We will keep both Robert and Evan in our daily prayers. God Bless, Ilona Doyle Edmonds, WA Ilona Doyle <idoyle@nwlink.com> Edmonds, Wa - Sunday, January 27, 2002 at 11:39:51 (GMT) Hi everybody, I miss you guys, but am glad you are able to be at home. This website is great (I like the pictures). I am writing to say hello...but also to let you know someone is trying to deliver a package to you. It took me a few days to realize the Fed Ex stickers in the window were for Robert. Starting on Nov. 27th, Fed Ex has been trying to deliver a package, but the last sticker I found was for the 28th, so they probably gave up. The package says Missy Bell and Robert Helenihi (so I am guessing Missy Bell is the sender). If you want to try finding it, the tracking number is 479 199 729 722 and the Fed Ex phone number is 1 800 463 3339. The fed ex station on this slip has an address of 2425 Kennedy St NE Mpls. I hope things are going well. You are in my prayers. I will be moving to St. Paul at the end of the month and my new address will be Marcia Haggerty 806 Idaho Ave St. Paul, MN 55114 Bubye Robert, Evan, Kelly, and Joe Marcia Haggerty <hagg0003@umn.edu> Minneapolis, MN - Tuesday, December 04, 2001 at 20:04:25 (GMT) 11/20/01 Welcome home to all of you! I'm so glad that you are back and that Robert is doing so well! Prayer does work!!! We miss you all at LSG but we hope that you boys have a wonderful home teacher. I hope that you have a great Thanksgiving! I certainly am thankful for Robert's strength and the great family he has to help him through. Bless all of you! Kathy Milans :) Kathy Milans <kathy@milans.org> Palm Harbor, FL - Wednesday, November 21, 2001 at 02:02:57 (GMT) I am so pleased to hear that Robert is home and doing well, it is nice to hear that there are some kids that do well from that horrible ordeal. Keep up the good work. Remember me from 4a? Jeff Shannon <Firemedcop@aol.com> Ft Lauderdale, Fl - Wednesday, November 07, 2001 at 23:52:34 (GMT) Hey Robert, its Danny from Church. Well I hope you are doing good. Everyone at church is praying. Get well soon,BYE! Danny Gardner Dunedin, FL - Friday, October 19, 2001 at 18:17:58 (GMT) Hey guys! Sorry to have been away for so long, but know that We think of you every day! The news on Robert is awesome and is nothing short of what I know of how God shows his lovingkindness toward us! Your blessings are ours too, and I am truly grateful that in our weakness, his strength is sufficient and grace abounds! The kids are hopping for joy at the news that their buddies are doing well and will hopefully be seeing them sooner than later. Tell Robert that his rockets are still waiting to shoot off as soon as he gets home! Adam is getting the cast off on the 23rd and Katie will be starting at Deer Park Elementary school within a couple of weeks as after having her tested for her speech she qualified for speech therapy but excelled otherwise to begin excellerated classes, possibly to go into first grade instead kindergarten!!! I will probably keep her in Kindergarten anyway as she would probably benefit more socially. So much news, no time to expound, nor the place, will call soon. As always, All of our love, Hugs & kisses to you all!-Ang Angie, Adam And Katie Baich <sixty3girlie@yahoo.com> New Port Richey, FL - Monday, October 15, 2001 at 01:57:00 (GMT) We are so happy that everything is going so well! You are so blessed. Give those boys a big hug from us. We'll see you in Florida soon. Laura and Christian <laura@magicbus.com> Asheville, NC - Wednesday, October 10, 2001 at 00:59:39 (GMT) Just a note to let you know that we pray for all of you and esp. Robert at this time. The updates are increasingly encouraging. God bless you all!! Chuck and Myrtle Chuck and Myrtle Booth <booth@tampabay.rr.com> Cunedin, FL - Tuesday, October 09, 2001 at 13:06:22 (GMT) HELLO MY HANDSOME LITTLE MEN, WE ALL MISS YOU SO MUCH AND CAN'T WAIT TILL YOU ARE BACK IN YOUR OWN HOME SAFE AND SOUND. WE HAVE A BIT OF RED TIDE IN THE GULF SO NOT MUCH IS HAPPENING IN OUR AREA. MA MA IS DOING FINE BUT MISSES HER BOYS. I DON'T THINK I RUFFHOUSE HER LIKE YOU DO. SHE DOES A GREAT JOB OF LETTING BALOU KNOW HE IS JUST A D O G. WE HOPE TO HEAR FROM YOU ALL SOON, DON'T FORGET TO CALL ON THE 800 NUMBER SO WE CAN HEAR YOUR VOICES. IT MAKES YOU SOUND SO MUCH CLOSER. HUGS AND KISSES TO ALL LOVE HEATHER AND THE CRITTERS. HEATHER SUTTER&MA MA CAT LARGO, FL - Monday, October 08, 2001 at 17:44:50 (GMT) HI BUDDY, JUST WANTED TO SAY HI AND I LOVE YOU AND MISS YOU. CAN'T WAIT TO SEE YOU AND EVAN, TELL EVERYBODY THAT WE'RE PRAYING FOR YOU ALL LOVE BOB. BOB HENN LARGO, FL - Monday, October 08, 2001 at 17:35:37 (GMT) HI BUDDY, JUST WANTED TO SAY HI AND I LOVE YOU AND MISS YOU. CAN'T WAIT TO SEE YOU AND EVAN, TELL EVERYBODY THAT WE'RE PRAYING FOR YOU ALL LOVE BOB. BOB HENN LARGO, FL - Monday, October 08, 2001 at 17:32:01 (GMT) Hello Robert, We are glad to hear you are back home again, and almost done with your antibiotics. We keep you and Evan in our prayers. Maybe on your way back home to Florida you can visit Rabon in Asheville and romp in the changing leaves. Let us know how we can help. Kelly, Joe, we are very proud of you both. Take Care. Christian, Laura, Rabon <christian@NOSPAMmagicbus.com> Asheville, NC - Tuesday, October 02, 2001 at 13:05:00 (GMT) Our thoughts and prayers are with you.Recently, our nephew was diagnosed with ald. He is 4 years old.We have been in contact with Johns Hopkins and have him on the special diet.My husband is 37 so the geneticist thinks it's unlikely that he is a carrier. But his sisters will be tested. My nephew has an appointment to go to Minnesota for the preliminaries for a Bone Marrow Transplant. If there is any information that anyone could provide for contacts, financing the trip, lodging,etc. please contact my husband or me at carsten@intop.net . Thank You for any help, Emily Carsten Jaime and Emily Carsten <carsten@intop.net> Fulton, MS - Sunday, September 30, 2001 at 21:00:17 (GMT) Grandmother misses all of you very much. Will love for you to come back to Florida. Love, Grandmother Judy Marsan <jpmarsan@att.net> Dunedin, Fl. - Sunday, September 30, 2001 at 15:02:34 (GMT) Thinking of ya'll. will try to call again soon. Love, Ang Angie, Adam And Katie Baich <sixty3girlie@yahoo.com> New Port Richey, FL - Wednesday, September 26, 2001 at 21:22:18 (GMT) Hi Everyone! Just a note to let you know that we miss you very much. We're keeping udated through the website and continue praying for you. Sorry to hear about the Hickman. Hope replacing it fixes the problem. We just got back from a 2 week vacation. We, of course, are horrified by the events of this past week. All we can do is pray. G man has lots of questions (as I'm sure Robert and Evan do), and we answer them as best we can. We love you and miss you. Stay strong. Rick, Erica and Galen <threeinthesun@aol.com> Palm Harbor, FL - Tuesday, September 18, 2001 at 19:51:49 (GMT) Just a quick note to let you know we are thinking of you and that we love and miss you. I'll give you a call-Ang Angie, Adam And Katie Baich <sixty3girlie@yahoo.com> New Port Richey, FL - Sunday, September 16, 2001 at 09:26:15 (GMT) I will keep on praying for you, because I know what the disease is. My husband has been diagnosed with ALD in June 2001. The situation is very bad, and there's nobody who can help us. BMT can not be done because he's adult. So I pray for Robert and Evan that they will survive and enjoy their lifes!!!! Linda <linda.moens@pandora.be> - Sunday, September 02, 2001 at 13:46:50 (GMT) Joe,Kelly,Robert and Evan, We continue to pray for you and for Roberts quick recovery.The updates sound very encouraging. God bless you all!!! Chuck and Myrtle Booth <Booth@tampabay.rr.com> Dunedin, FL - Wednesday, August 29, 2001 at 16:46:45 (GMT) We praise God for the testimony you have all been. We praise God for your progress. We will watch for updates and be praying for you from The Gambia, Africa. In Christ, Paul and Sandy Paul & Sandy Rog <pandsrog@aol.com> north tonawanda, ny - Thursday, August 23, 2001 at 19:30:11 (GMT) I am so happy to hear that Robert is doing so well. I pray that he continues his upward movement and has no other problems. Remember to make him wear that mask all the time! Please contact me if you need any questions answered. Jeff Shannon <FireMedCop@aol.com> Ft Lauderdalw, Fl - Wednesday, August 22, 2001 at 10:15:27 (GMT) Happy Birthday to you! Happy Birthday to you! Happy Birthday dear Robert! Happy Birthday to you! We Love you! You'll be hearing from us soon!! Angie, Adam And Katie Baich <sixty3girlie@yahoo.com> New Port Richey, FL - Tuesday, August 21, 2001 at 20:57:28 (GMT) Joe, I hope you remember who I am, it has many many years. I just finished reading today's paper and saw the article about your boys. I felt that I had to write and let you know that you and your family are in my thoughts. When things are better for your family, I would love to get together and meet your family. I too have a five year old boy who is starting Kindergarten on Wednesday. I look forward to hearing from you and hope that all is going well for Robert. Lisa Lisa Newmark-Miller <messykessy@aol.com> Clearwater, FL - Monday, August 20, 2001 at 22:19:19 (GMT) I am so excited to hear that you are home (so to speak anyway) and doing so well. I hope you are enjoying your games still, but don't overplay them cause you will need them (and many others) this winter. While playing in the snow is fun, being inside in the heat feels good too. Build a big snowman and take a picture (with your whole family in it) to put on your website. Take care brave boy. God Bless - Susan Spoto Susan Spoto <susan_spoto@howardsystems.com> Stamford, CT - Friday, August 17, 2001 at 15:07:37 (GMT) Hi Robert, We hope you are feeling better.Get well soon! We'll continue to pray for you every night and know that Jesus hears our prayers. When it gets closer to the day you will be coming home, we'll plan your party with you. See you soon, Love and God bless you, Hannah, Bethany, and Jena and baby Juliet Hannah and Bethany and Jena <motyl6@juno.com> Clearwater, Fl - Monday, August 13, 2001 at 19:12:02 (GMT) Robert, So happy to hear the news today. What a wonderful set of messages you have received. I love you. Love Grandmother. Judith P. Marsan <jymarsan@aol.com> Dunedin, fl. - Monday, August 13, 2001 at 18:35:30 (GMT) 08132001 HI ROBERT, I'M THE LADY THAT WORKS WITH YOUR GRANDMA AND SHE HAS BEEN UP DATING US ON YOUR PROGRESS! PRAISE GOD! OUR PRAYERS ARE BEING ANSWERED. MY FAMILY WOULD LIKE TO HAVE YOU ALL OVER FOR A WELECOME HOME ROBERT AND EVAN PARTY. WE'RE ALL VERY PROUD OF YOU AND HOW BRAVE YOU HAVE BEEN. CONTINUE TO PRAY FOR YOUR FULL RECOVERY AND WE'LL DO THE SAME FROM HERE. GOD BLESS AND LOVE, JOANNE JOANNE MOTYL <A058764@ALLSTATE.COM> PALM HARBOR, FL - Monday, August 13, 2001 at 15:23:07 (GMT) I got your website thru my brother in law whos son , my nephew has ALD. I wanted to let you know that i think the website is very well done and is very imformative to those who are not aware of the disease. I will pass it on to others. You will all be in my prayers as you go forward with this disease. My nephew chase had his transplant almost 8 months ago, we continue to hope for the best for him and his continued battle with ALD. I continue to be amazed at how strong Chase, my sister and my brother in law are. Kids are amazing. Never give up hope, and know that i along with many others will be praying for all of you. Cal Isaacs Cal Isaacs <Scoop1@aol.com> Griffin , Ga - Saturday, August 11, 2001 at 21:05:52 (GMT) Hello Robert and Evan and of Course Mom and Dad!! Just to let you know that I am praying for you and know that this is a long haul. I got your website address form Toni Sommo the mother of a bao who had ALD! I had the opportunity to get to know this family through Geoffrey their son. Geoffrey was a special little boy who I grew to love as if he was my own. ALD is not a fun disorder. And I know you can be frustrated, hopeful, fearful, and sad. Just know that a group of people who really know about ALD are praying for all of you. Try to include some fun things into you life on a daily basis and look to be always hopeful. My prays and thoughts are with you and I nknow the Energizer Bunny (Geoffrey) is watching over you All. Anne Marie Lockhart Anne Marie Lockhart <amlock@captial.net> Lake George, NY - Friday, August 10, 2001 at 09:37:56 (GMT) In case you're wondering why I don't call, I washed your new phone #. If I dont hear from you by Sun afternoon I guess Ill see you @ the airport! -wik- wik <vbrubaker33@home.com> - Wednesday, August 08, 2001 at 20:38:09 (GMT) Just wanted to let you know we are thinking and praying for your family. We miss you at Church. Love The Wayne's Jim, Anne and Stephanie Wayne <jwayne@ccdosp,com> St. petersburg, Fl. - Wednesday, August 08, 2001 at 18:50:15 (GMT) We are so very happy that Robert is doing so well and is being discharged today! What an incredible kid he is! Give the boys a hug and kiss from us - we love you all!!! Laura and Christian Dunedin, FL - Wednesday, August 08, 2001 at 16:58:06 (GMT) Hey Now! Just a quick note to let you know we're keeping an eye on Roberts progress. I know it's tough right now but keep on keepin' on. Adam will be having his biopsy 8/10 ( I hope), I found a good oncologist from All Childrens and am confident all will be well. I keep telling him he has to be brave like Robert is brave and it seems to calm his fears. Otherwise, we are fine and happy to be home, a feeling I hope will be yours sooner than later. We love you and as always and forever you're in our prayers. I will call as soon as I can!!-Ang Angie, Adam And Katie Baich <sixty3girlie@yahoo.com> New Port Richey, FL - Tuesday, August 07, 2001 at 10:09:40 (GMT) Hello Kelly, I am the guy you met at the hospital. My son was an ALD boy also, unfortunatly he had many complications. I am sure that your boy will do great through this terrible ordeal. Just remember to always keep a good attutude about things and show him that you are there for him no matter what. My prayers are with you. Jeff Shannon <FireMedCop@aol.com> Coral Springs, Fl - Saturday, August 04, 2001 at 19:15:01 (GMT) Hello Kelly, I am the guy you met at the hospital. My son was an ALD boy also, unfortunatly he had many complications. I am sure that your boy will do greast through this terrible ordeal. Just remember to always keep a good attutude about things and show him that you are there for him no matter what. My prayers are with you. Jeff Shannon <FireMedCop@aol.com> Coral Springs, Fl - Saturday, August 04, 2001 at 19:14:12 (GMT) I work with Judy Marsan, Robert and Evan's grandmother. I was just checking to see how the boys were doing. It looks very promising. I will continue to keep the boys in my thoughts and prayers and look forward to an update from Judy when she returns to Carwise in a couple weeks. God Bless Paula Nelson <Paula_Nelson@placesmail.pinellas.K12.fl.us> Palm Harbor, FL - Friday, August 03, 2001 at 08:22:32 (GMT) Dear Robert, Evan, Mom & Dad,Just a short note to let you know that we have you in our Prayers every day for a complete recovery. We miss seeing your smiling faces in Church. We love you, we miss you. God Bless...Your friends in Christ, Lois & Bob Lois & Bob DeMoranville <bldemo@webtv.net> Palm Harbor, Fl. - Thursday, August 02, 2001 at 08:50:32 (GMT) Hey Robert,Evan,Kelly,and Joe!We miss you guys so much!Our hopes and prayers are with you guysCall us and e-mail us soon!We miss you.Take care and god bless.WE LOVE YOU!Sid,Ed and Sarah and Melissa Sid,Ed,Sarah and Melissa <trimix1234@aol.com> Holiday, FL - Saturday, July 28, 2001 at 17:38:13 (GMT) Glad the bone marrow transplant is behind you. Now we can look forward to the glorious healing. You are in our prayers daily Love You, Aunt Joa and Uncle Chuck Here's a message from Alena--Glad you are okay, sweetie. Love, Alena Joan Lashley <jklashley@webtv.net> - Sunday, July 22, 2001 at 18:27:41 (GMT) Dear Helenihi Family, I got your address for this web site from my boss who goes to church with Galen's aunt in Ozark Mo. I just wanted to write and tell you how brave you all are. I read your web site and it not only broke my heart but it gave me inspiration. For Robert and Evan to be as brave as they are with all that they are going thru makes me sad that I complain. I want you all to know that I will remember you in my prayers every night and will have a special prayer request sent at church. Hold your head up, keep your spirits high and know that there is a guardian angel watching over you every minute of every day. Love to all Sandy Sandy <sholdren@hotmail.com> Springfield, mo - Friday, July 20, 2001 at 20:37:23 (GMT) Hi Boys, You probably don't remember me, but I am a friend of your Mom and Dad's. I don't live close by and it has been a long time since I met ya'll. You were both pretty little. But I do still keep up with your Mom, if not always in person then at least through the grapevine. I want ya'll to know that I'm thinking of you. I know that this is your year. - Lotz of Luv - Susan Susan Spoto <susan_spoto@howardsystems.com> Stamford, CT - Friday, July 20, 2001 at 16:11:04 (GMT) Joe, I haven't talked to you in years. I got this message from Michele Suarez and wanted to pass my thoughts and prayers on to you and your family. God Bless!!! Gary Oakley <goakley1@tampabay.rr.com> Largo, FL - Friday, July 20, 2001 at 12:33:12 (GMT) Robert and Evan, Our thoughts are with you. Galen's Aunt from Ozark gave me your address. Just wanted you to know that we are praying for you. Lisa Lisa <littlechocktaw@home.com> Springfield, Mo - Thursday, July 12, 2001 at 19:53:21 (GMT) hope you get my notes i go to l.s.g .elem. hope we can meet when you get home. Sam sam calarco <countsonny123@aol.com> palm harbor, fl - Thursday, July 12, 2001 at 18:14:28 (GMT) I'm interested in following up with you on Robert's procedure. Please contact me when it's complete. Thanks and I'll be praying for you. Julie Church St. Pete Times (727) 445-4229 julie church <church@sptimes.com> Palm Harbor, FL - Thursday, July 12, 2001 at 09:58:04 (GMT) You two are very brave and couragous little boys. I know that life is difficult because I have many medical problems also. However you just have to remember that everything will workout in the end. God has a plan for you and will always be there for you and your family. Stay strong and NEVER give up! Shannon Goodlett <Shanon321@aol.com> Granbury, TX - Tuesday, July 10, 2001 at 11:39:06 (GMT) We are keeping you all in our prayers. Remember with God al things are possible. Love toyou all. Chuck Chuck Booth <Booth@tampabay.rr.com> Dunedin, FL - Tuesday, July 10, 2001 at 09:38:47 (GMT) Dearest Robert, Evan, Kelly & Joey, We just want you to know that we love and miss you every second of the day! We are still hangin' out in NH having a blast. The kids are enjoying being spoiled and I have been able to see some shows in Boston when I'm not working. Such a cool place to hang. I will be taking the kids back to FL 7/8 but will not arrive home until the following week as we will be visiting Sue, the White House, and my mom in NC. I will be stopping at Silver Glen and will take a big dive for you guys. I can't wait until we can take one of our day trips together again. Adam and Katie miss the boys very much and tell me that they want to go home because they miss them. I'm not sure they grasp the time factor but I will continue to let them know that we all will be together soon. I may leave them with Jeff and come back up here to work. It will help me pass the time until you come home. Nothing is set in stone with me right now, I was never great at making decisions, so I will do what I always do and take it one day at a time. You know that I love you and so does Missy- She sends all her love. Know that I'll be thinking of you all and praying in earnest knowing all along that you all will be just fine, the victory is already won no matter what. WE LOVE YOU to the sky!!!- Ang, Adam and Katie (who told me she is going to marry Evan when she grows up) Angie, Adam And Katie Baich <sixty3girlie@yahoo.com> Exeter, NH - Friday, July 06, 2001 at 23:41:33 (GMT) We wanted you to know that you continue to be in our thoughts and prayers. Please give the boys, Will's best wishes and give them a hug for me. I'll keep watching this website for updates. Love, Elisa Daskam Elisa Daskam & Family <WDaskam@aol.com> Palm Harbor, FL - Wednesday, July 04, 2001 at 11:26:53 (GMT) HELLO TO ALL! We miss you VERY much (Gert, too). Sorry to hear about the setback. Florida is still here; it is still hot, but we've had quite a bit of rain lately. I hope to talk to you soon. (I'll try to call Judy, too.) I keep Galen informed as to the updates as they occur. WE LOVE YOU. WE MISS YOU. Rick, Erica and Galen Liebold <threeinthesun@aol.com> Palm Harbor, FL - Wednesday, June 27, 2001 at 10:31:36 (GMT) Robert and Evan, our prayers are with you and the family. We hope all goes well on 20July. We are friends of Sara and OH King. Keep the faith. Martha E and Phil Price <philmarprice@mindspring.com> Byron, GA - Wednesday, June 27, 2001 at 10:05:33 (GMT) We are thinking about you and saying our prayers. Carol Chrisman <cchrisman@fdic.gov> Knoxville, TN - Tuesday, June 26, 2001 at 14:05:41 (GMT) Dear Evan and Robert: You don't know me, but I feel like I know you. I just read the wonderful website that your Mom and Dad have set up for you. I had a little boy just like you Robert, but by the time we found out that he was sick like you, it was too late to have a Bone Marrow Transplant. His name was Geoffrey and we called him "The Energizer Bunny". Geoffrey didn't want anyone to know he was sick and tried to pretend that nothing was wrong. He learned to pretend so well and cover up the fact that he couldn't see well that NO ONE knew anything was wrong until Geoffrey was almost completely blind. You and your brother, Evan, are lucky in that your Mom and Dad found out early enough to get you the kind of help that will make you better. I know that being stuck in the hospital is going to be sort of 'yucky' for you Robert, but if you'd like, I'll e-mail you often. And if you don't mind, I'd like to tell my little boy's best friend, Benjamin, about you so that he can e-mail you too. You see, Benjamin misses Geoffrey so much and I think he'd feel really happy if he could help you make the time go by quicker by writing to you and getting to know you while you're stuck in the hospital. As a matter of fact, if it's O.K. with your Mom and Dad, I'd like to let Geoffrey's classmates know about you too. They are all quite good at using computers and are going into the fourth grade in the fall. Geoffrey got sick in second grade, and all of his classmates know all about ALD. When you feel up to having some new friends and Mommy can help you, she can let me know and we'll begin sending you e-mails and pictures through the computer. Geoffrey has a big brother, Philip John. He's twelve and we call him P.J.. He's going into the seventh grade and he misses his little brother so much that sometimes he cries. I told P.J. about you. We went to Minnesota too, and visited Lego Land and The Mall of The Americas,) hoping that they could help Geoffrey like they're helping you. Dr. Peters is really nice and before you know it, you'll be sitting up in bed and feeling better. And then you won't have to worry about the disease making you sick anymore. We are going to add your name to the church's prayer list, and tell all of our friends in Glens Falls about you so that they can pray too. They all prayed for Geoffrey, and they know what you and your family are going through, so you'll have lots of people making sure God's paying attention on the day you start your Bone Marrow transplant procedure. Remember that Geoffrey is very busy up in heaven. He's taking care of all the little boys down here on earth that are sick like he was. So you have a very special guardian angel and he's going to be watching over you and Evan and making sure you're safe and happy and healthy. Please tell your Mom and Dad that they are in our prayers and that if Mom or Dad need to talk, we'd be happy to listen. Sometimes you just have to talk to someone who understands. I'm going to say some prayers for you tonight, and I promise, because I'm really good at it, I'll be praying all the time, too. If, when you're sleeping, you see a little boy your age, who likes to dress up with an eye patch and a pirate's outfit (even though he insists on wearing cowboy boots with it), you'll know that's Geoffrey, watching over you while you sleep and visiting you in your dreams. Tell him I love him and miss him, and that his Mommy is very grateful that he's taking such good care of you. God Bless you sweetheart - and your brother and Mom and Dad too. My love, my prayers, my heart are with all of you. Toni Sommo Toni Sommo <sommo@localnet.com> Glens Falls, NY - Monday, June 25, 2001 at 22:43:02 (GMT) Dear Evan and Robert: You don't know me, but I feel like I know you. I just read the wonderful website that your Mom and Dad have set up for you. I had a little boy just like you Robert, but by the time we found out that he was sick like you, it was too late to have a Bone Marrow Transplant. His name was Geoffrey and we called him "The Energizer Bunny". Geoffrey didn't want anyone to know he was sick and tried to pretend that nothing was wrong. He learned to pretend so well and cover up the fact that he couldn't see well that NO ONE knew anything was wrong until Geoffrey was almost completely blind. You and your brother, Evan, are lucky in that your Mom and Dad found out early enough to get you the kind of help that will make you better. I know that being stuck in the hospital is going to be sort of 'yucky' for you Robert, but if you'd like, I'll e-mail you often. And if you don't mind, I'd like to tell my little boy's best friend, Benjamin, about you so that he can e-mail you too. You see, Benjamin misses Geoffrey so much and I think he'd feel really happy if he could help you make the time go by quicker by writing to you and getting to know you while you're stuck in the hospital. As a matter of fact, if it's O.K. with your Mom and Dad, I'd like to let Geoffrey's classmates know about you too. They are all quite good at using computers and are going into the fourth grade in the fall. Geoffrey got sick in second grade, and all of his classmates know all about ALD. When you feel up to having some new friends and Mommy can help you, she can let me know and we'll begin sending you e-mails and pictures through the computer. Geoffrey has a big brother, Philip John. He's twelve and we call him P.J.. He's going into the seventh grade and he misses his little brother so much that sometimes he cries. I told P.J. about you. We went to Minnesota too, and visited Lego Land and The Mall of The Americas, hoping that they could help Geoffrey like they're helping you. Dr. Peters is really nice and before you know it, you'll be sitting up in bed and feeling better. And then you won't have to worry about the disease making you sick anymore. We are going to add your name to the church's prayer list, and tell all of our friends in Glens Falls about you so that they can pray too. They all prayed for Geoffrey, and they know what you and your family are going through, so you'll have lots of people making sure God's paying attention on the day you start your Bone Marrow transplant procedure. Remember that Geoffrey is very busy up in heaven. He's taking care of all the little boys down here on earth that are sick like he was. So you have a very special guardian angel and he's going to be watching over you and Evan and making sure you're safe and happy and healthy. Please tell your Mom and Dad that they are in our prayers and that if Mom or Dad need to talk, we'd be happy to listen. Sometimes you just have to talk to someone who understands. I'm going to say some prayers for you tonight, and I promise, because I'm really good at it, I'll be praying all the time, too. If, when you're sleeping, you see a little boy your age, who likes to dress up with an eye patch and a pirates outfit (even though he insists on wearing cowboy boots with it), you'll know that's Geoffrey, watching over you. Tell him I love him and miss him, and that his Mommy is very grateful that he's taking such good care of you. God Bless you sweetheart - and your brother and Mom and Dad too. My love, my prayers, my heart are with all of you. Toni Sommo <sommo@localnet.com> Glens Falls, NY - Monday, June 25, 2001 at 22:29:09 (GMT) Just want to let you know you are in our prayers, and with the power of all that are praying for you, you will be home and going to the pool again and having fun. Love Lydia Debbie Eddie Lydia , Debbie , Ed <eresmondo@aol.com> Palm Harbor, Fl - Monday, June 25, 2001 at 09:29:31 (GMT) Braves are kicking______. Mama King said not to use that bad word. Hope all is going well with you all. Love you!! Mama King, Gangy and Aunt Gail Sara and O.H. King <ohking@alltel.net> Blakely, GA - Sunday, June 24, 2001 at 07:42:52 (GMT) Hey Robert and Evan, Have you beento the Mall of America enough yet? I am thinking of both of you here in Germany. I will talk to you soon. Love, Uncle Harris Uncle Harris - Friday, June 22, 2001 at 20:53:27 (GMT) Hello to the Helenihi family! Just want you all to know that your Palmer kin in Eufaula, AL think of you daily. We are praying that all goes well with Robert's bone marrow transplant. On my computer are stick-on pictures of Robert & Evan. Every time I sit down to it, I see their smiling faces. We love you! James Palmer <palmeur@zebra.net> Eufaula, AL - Friday, June 22, 2001 at 15:50:39 (GMT) We met Harris thru our son Jeff when they studied in Germany. We will be thinking and praying for you all as Robert under goes his procedure and during the recovery process. God bless you all! Pat & Rick Harding P.S. Our daughter is to have a baby in a couple of weeks and has already agreed to donate the umbilical cord blood. Pat & Rick Harding <tricia@islandwest.com> Terry, MT - Thursday, June 21, 2001 at 23:22:00 (GMT) Robert and Evan, I am a friend of Harris in St. Thomas, Virgin Islands. You two are in my thoughts and prayers and will continue to be. I have complete faith and confidence that all will work out wonderfully. God bless the two of you and your family. Bill Nixon <whn00@yahoo.com> St. Thomas, VI - Thursday, June 21, 2001 at 07:33:41 (GMT) Kelly and Joe, you know that my love and very being are with you now. Love, Beth Beth Freedman <bethfreedman@hotmail.com> Atlanta, GA - Wednesday, June 20, 2001 at 16:22:27 (GMT) Hi Robert, this is Klaus, a friend of Harris in Germany. I want to wish you good luck tomorrow. I talked to a friend of mine about your bone marrow transplant today. He said he donated bone marrow for his brother a couple of years ago. His brother had leukaemia. He said the transplant wasn't painful at all. Just like any regular blood transfusion. My friend's brother is a healthy father by now and can't even believe any more that he was that ill. Good luck to you, Robert. Klaus Klaus Borkenstein <k.borkenstein@dkfz.de> Heidelberg, - Wednesday, June 20, 2001 at 15:11:01 (GMT) Robert & Evan, I am a friend of Harris'. You have a very special and loving family. Best wishes to all of you. You are in my prayers. Good luck tomorrow Robert! People worldwide will be thinking of you!! --Kristine Kristine Harding <jaharding1@aol.com> Miles City, MT - Wednesday, June 20, 2001 at 14:10:47 (GMT) Robert, I am a friend of Harris' and live in Montana --know that thoughts and prayers from around the world are headed your way. Best wishes for tomorrow and throughout your recovery. jeff harding - Wednesday, June 20, 2001 at 11:13:26 (GMT) Hi Robert, I'm a friend of Harris in Germany and I want to wish you all the best with your transplant. Be brave and give your Mom and Dad a big hug from me. God Bless, Shane Shane Walshe <enniscrone12@hotmail.com> Bamberg, - Wednesday, June 20, 2001 at 10:03:09 (GMT) Hi Robert-- I'm a friend of Harris and I want to wish you well with your transplant. Your family loves you a lot and can help you have strength and courage in tough times. People all over the world are thinking about you and sending their hopes of good health and happiness to you. Best wishes! -tee Tee Parham Boulder, CO - Tuesday, June 19, 2001 at 22:40:40 (GMT) I'm a college buddy of Harris. You guys have heart and courage beyond compare. I'll be thinking of and praying for you. Trey Jarrard <TJarrard@peoplepc.com> Anderson, SC - Tuesday, June 19, 2001 at 22:02:16 (GMT) Dear Robert, I'm friends with Harris, and he has talked very proudly about you and your brother for years. I know that Thursday is a big day for you with the surgery. Just remember to think about all of the things you love to do and know that people from around the world are thinking about you and wishing you well. I know that your surgery will be a success, and you'll be back climbing trees and playing ball soon. Much love, Angie Parham Angie Parham <angelapar@hotmail.com> Boulder, CO - Tuesday, June 19, 2001 at 12:59:36 (GMT) HEY OUR PRAYERS ARE WITH ROBERT, EVAN,JOE&YOU KELLY.WE LOVE YOU ALL. STAY POSITIVE ANGELA RAINES ANGELA RAINES <AAR470@AOL.COM> PHENIX CITY , AL - Monday, June 18, 2001 at 21:59:28 (GMT) Hello to all of you. It sounds to me like you are in good hands but let me know if there is any more I can do to help. Kelly, write when you can. My thoughts are with you. cousin Greg Greg Nesbitt <firegoat@bellsouth.net> New Orleans, La. - Monday, June 18, 2001 at 13:05:25 (GMT) USA SO MUCH LOVE TO YOU. From Me - Saturday, June 16, 2001 at 00:01:01 (GMT) Hello to all from your home Church! (I'm the Youth Sunday School teacher - Sheri)We're praying for God's merciful hand in all your medical procedures and for a total cure! If you can send me an email address I'd like to send a crazy card or two to the boys. Praying for you all - Love in Him, Sheri Gruden Sheri Gruden <sherigruden@hotmail.com> Palm Harbor, FL - Friday, June 15, 2001 at 20:20:46 (GMT) Hi Kelly,Joe,Robert&Evan!We miss you very much & pray for you daily. (Need your full address in MN for flyers.) Rick, Erica and Galen Liebold <threeinthesun@aol.com> Palm Harbor, FL - Monday, June 11, 2001 at 09:16:59 (GMT) Uncle Leonard, Aunt Frances, & GreatGrandmother Palmer are all praying for you. We love you. Frances P. Messer Cuthbert, GA - Monday, June 11, 2001 at 08:00:31 (GMT) I remember Robert from my daughter, Emily Sayas' kindergarden class. He was dressed as Barney on halloween...Our hearts are with him. I will send a donation to help. Take care, Jackie Jackie Miller <jackiemil8888@msn.com> palm harbor, fl - Sunday, June 10, 2001 at 01:37:51 (GMT) Just to let you know you are in my prayers and everyone I know at church is praying for you too. Great web site. God bless you Chuck Booth <Myrtle1@gte.net> Palm Harbor, FL - Saturday, June 09, 2001 at 13:04:19 (GMT) We hope all goes well for you boys.You're in our prayers. Ann-Marie Doyne <doyne-willis@juno.com> Largo, FL - Thursday, June 07, 2001 at 10:20:49 (GMT) Robert and Evan, we are praying for you and can't wait until you get back down here to Florida where you belong. susan mckinzie <bmcki50019@cs.com> palm harbor, fl - Wednesday, June 06, 2001 at 14:42:26 (GMT) My son, Jesse, is in the 2nd grade at L.S.G.. You will all be in my prayers. I will say an extra prayer for Robert as he begins his journey to a possible cure! Peace. Claudia Claudia <sclaray@juno.com> Palm Harbor, FL - Wednesday, May 23, 2001 at 14:08:52 (GMT) My daughter, Madison O'Brien, attends Lake St. George. I am very moved by your story and your web-site is phenomenal! We will keep you in our prayers and are sending a donation today. God Bless! Candi O'Brien <cobrien119@aol.com> Palm Harbora, FL - Wednesday, May 23, 2001 at 08:25:00 (GMT) As Robert approaches his bone marrow transplant date my prayers and visualisations of a successful outcome are with each of your family members. GOD BLESS!! Lisa Johannsen <Lovinghnd@aol.com> St.Petersburg, FL - Saturday, May 19, 2001 at 07:02:05 (GMT) We love you guys!!! Laura and Christian <laura@magicbus.com> Dunedin, FL - Monday, May 14, 2001 at 11:01:42 (GMT)
Return to Top	Stem Cell Research Can Cure ALD