When Robert and Abbey wanted to start a family, things didn’t happen right away. After trying for five years, they decided to put it on hold. Then the same month Abbey applied for grad school, they find out that they were indeed expecting. She had a completely normal pregnancy and delivered their beautiful little boy, William, right around 40 weeks.
“Sweet William,” as he’s been nicknamed, seemed to be developing just like any other baby, up until he was about three months old. He started to become a picky eater, which was abnormal for William because he was in the 97th percentile on the growth charts and exceeding all the norms. His weight started to slow down, his muscles and joints started to stiffen, and finally around five months old, he quit eating completely.
After William was admitted to the hospital, Robert and Abbey had found out their baby had a rare genetic disorder called Krabbe Disease. It’s a type of leukodystrophy, and involves an enzyme deficiency. Without that enzyme, lipids start to build up in the brain and become toxic. As a result, the growth of the nerve’s protective myelin sheath deteriorates and causes severe degeneration of motor skills. There is no treatment for this disease unless it is caught before the symptoms had begun.
In William’s case, it was not caught before the symptoms appeared; however, the disease was diagnosed early enough he was considered a candidate for treatment. So, the next option was a blood cord transplant. He received donated cord blood from an anonymous woman, which allowed stem cells to be transplanted to improve his quality of life. The stem cells took several days to engraft, and during that time William needed 15 blood transfusions and 9 platelet transfusions. Without the generosity of these donors, William would not have survived the transplant.
Sweet William recently celebrated his second birthday. Robert and Abbey host blood drives, as a way to express their gratitude for the donors who’ve helped their Sweet William.