Jame's Story

James was born at 27 weeks weighting 2 pounds and 14 ounces. He lived in the nursery intensive care unit for almost 3 months. Through out James childhood he was in and out of the hospital for respiratory infections. James was very active happy boy. In second grade he was having learning disabilities. The doctor told me he had adhd and was put on medicine for it. He continue to struggle in school and shortly before his 11 birthday he was having lots of behavior issues. He tried to start a fire on my porch and in his grandmother living room on her rug. He also killed our baby kitten. That is just a few of his bad behavior issues. He went to counseling for this. But things just got worse. Shortly before his 12 birthday he had a mri done on his brain, cat scan run , eeg, skin biopsy done. On April 15 2003 James was diagnosed with X-link adrenoleukodystrophy. There is no cure for James, also he was progress to far to have a bone marrow transplant done. James Nero doctor gave James 18 months to 3 years to live. James and I were sent to Baltimore to KKI and we saw Dr. Raymond on May 2 and he confirmed that James had the x-link adrenoleukodystrophy and there was nothing he could do for him. I also was confirmed that I am a carrier for ald.So I brought James home. James continue to be his happy active self. Continue in school. James had a g-tube placed so he could get his meds through it. James did well for a little over a year. Then he was having problems walking, controlling his urine and bowels he wore pull-ups. Having problems feeding himself with utensils. He did fine with finger food. On July 4 James ended up with 7 stitches in his chin because he fell coming up our steps. On July 26 2004 I placed James at Crotched mountain rehab facility. To me that was the best choice I could do for him.James continue to decline for the first 3 years of his disease. He now cant walk any more. Feed himself at all. All of his food is puree and his liquids have to be thicken. He doesn't drink enough liquid so he gets water flushes through his g-tube. He is back in school. There is a school right at Crotched mountain. James get speech, ot, and physical therapies. James speech therapist is working on a communication device for him to use. Even thou James cant walk and is in a wheelchair. He is very active. He goes swimming,he is in a dance class, goes bowling. Does special Olympic bowling. He goes to church. April 15 will be 8 years since James was diagnose with ald. I hope you will read my story. Hopefully there will be a cure for adrenoleukodystrophy soon.
~ Terry Lessard