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's 2001 Bone Marrow Transplant I have been taking my sons annually to the Kennedy-Krieger Institute for Neurogenetics at Johns Hopkins University Hospital in Baltimore, MD since 1994 as part of the Lorenzo's Oil / Diet study for ALD. Every visit they have a complete physical including an MRI, with special focus on the endocrine system and neuropsychology so as to assess any changes in intellect and / or physical function. The MRI is the primary diagnostic tool to assess the boys' condition. In December 2000, I was told that Robert's MRI showed significant changes, and that the only way to treat him was to have a Blood Marrow Transplant as soon as a compatible donor could be found. After consulting with All Children's Hospital in St. Petersburg, Florida (which is close to our home), we concluded that taking Robert up to the Fairview University Medical Center at the University of Minnesota in Minneapolis was our best option. The team there has performed over 200 Blood Marrow Transplants for metabolic disorders, which includes ALD. After we arrive in Minnesota, Robert will undergo six days of preparative therapy. This basically involves destroying his own immune system and bone marrow with chemotherapy and radiation. During this time Robert will be very ill due to the rigors of radiation and chemotherapy, and will most likely experience hair loss, nausea, lack of energy, and mouth sores. The actual transplant itself is very similar to a blood transfusion. The donor's blood marrow is transfused through an IV. This procedure only takes a few hours. The recovery from a Bone Marrow Transplant is a long arduous process. Robert will need to remain in the hospital for at least 100 days. He will need to remain isolated for a full year after the transplant. He will need to be home-schooled and the number of visitors to the house must be limited. From a kid's point of view, this means no classmates to play with, no swimming trips to the beautiful Florida Springs that we are so fond of, no birthbay parties, no family reunions, no movie theaters, no visits to Chuck E. Cheese, or any other activity that makes being a kid so awesome and fun. This necessary isolation will come at a time in Robert's life when familiar surroundings and close physical contact with family and friends is most needed. Many of our friends have asked me how they can be tested as a potential donor for Robert. Unfortunately, the odds of a non-relative match is 1:10,000 and the $1500.00 price of the test for random donors is not covered by insurance. I tell everyone that the best way to help any child in this situation is to join over 200,000 americans and millions worldwide who have volunteered as potential bone marrow donors. If you are an expecting a child and have no known genetic diseases, please consider donating your umbilical cord blood to the Cord Blood Registry. Not only is it free, but you can save a life with something that the hospitals usually discard. For a chronological update on Robert's Bone Marrow Transplant, which is now scheduled for July 20, 2001 in Minneapolis, please visit his Updates page. For more information about becoming a bone marrow or cord blood donor, please visit our ALD resources page.
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