Where there's a WILL, there's a way! William has early infantile onset Krabbe Leukodystrophy. William is the son of Robert and Abbey (Glasgow) Branch.
PO BOX 62
Davenport, IA
52805
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William was diagnosed with Krabbe Leukodystrophy at the age of 5 months old. He underwent a stem cell transplant at the age of 7 months old and just recently celebrated his 4th birthday.
William developed normally. My undergraduate being in education, I was keyed into the milestones that he should be reaching by a certain time, and he was exceeding these norms. He was a big boy, somewhere around the 97th percentile at his 2 month appointment. Of course, we weren't surprised at his size given his family line; mommy being 5'9" and daddy being 6'4".
Robert and I moved across country when William was little. Once we moved to our final destination, William was about 3 months old. At that time, he started to change. We had an explanation for how he had become a picky eater and how his weight gain slowed down dramatically: stress from the travel, switching from breast milk to formula, and honestly everything made sense. I immediately took him into the pediatrician and we tried so many different types of formula, even at one point giving him a diagnosis of milk protein intolerance (not true, by the way.) The doctors said that he was such a big boy it wasn't too scary that he wasn't gaining weight as quickly, but of course I was not OK with any change in my boy's eating habits and weight gain. He stopped growing at about 14 lbs. His muscles and joints started to stiffen. I could still bend his arms and legs, but they were rigid. At that time, I went to another pediatrician and he thought it may be Cerebral Palsy. I was floored. I knew too much about the disease having a major in special education, and KNEW it didn't get worse over time. Cerebral Palsy is also a brain injury that happens before, during or after birth. Just doesn't make sense. So, I went to yet another pediatrician and he was AMAZING. He immediately referred us to Primary Children's Hospital in Salt Lake for a neuro evaluation. They see hundreds of babies with CP, and she did not believe it was CP because he was "too bright".
This is a very long story with a lot of trips to Salt Lake, but William was eating just enough to not become dehydrated. However, soon after he turned 5 months old, he quit eating completely. I couldn't even get him to take Pedialyte anymore. My pediatrician fast-tracked us to Salt Lake where William was admitted. After several tests and an abnormal MRI, it was presumed he had a rare genetic disorder. It is a type of leukodystrophy called Krabbe Disease. We were told he would not live past his 2nd birthday. There is treatment for it, ONLY if it is caught BEFORE symptoms began. We were told there was no treatment available for William because he had already started to show signs. William will eventually die from not being able to breathe on his own. He will go deaf, blind and have seizures. Paint a picture of every parent's worst nightmare, and that was what we were given after our trip to Salt Lake. However, the blood test took 3 weeks to get the results, and in the meantime we were sent home on a NG feeding tube to get William his much needed nutrients. Ironically, all of his symptoms correlated with malnutrition, so we were really hoping that with some food his body and brain would heal itself. Well, it didn't although he was much happier!
