Meet Erik – The longest living survivor of an umbilical cord blood transplant from the University of Minnesota.
The First Recipient of a Cord Blood Transplant for Krabbe Disease - Erik's Story
More than a decade after being the first recipient of a cord blood transplant for Krabbe Disease (leukodystrophy), a fatal genetic disease of the nervous system, at the University of Minnesota and just the seventh in the world, Erik is a normal young man who loves donuts and riding his bike.
The Treatment – An Amazing First
Erik’s diagnosis as a toddler more than thirteen years ago came just two weeks after his younger brother Adam’s. His parents, Kim and Paul, were shocked — their elder son showed none of the symptoms. Sadly, Adam died nearly a year later, but the umbilical cord blood transplant (UCBT) was a success for Erik, now the longest living survivor of a UCBT from the University of Minnesota.
Back in 1994, Dr. William Krivit, the physician who oversaw Erik’s transplant, was not hopeful about the outcome of the treatment. Krivit said the best case scenario would be that the medical team could save Erik’s life, but that he would likely have severe physical and mental problems. Six kids had received transplants for Krabbe’s disease, and three had died during or shortly after the transplant.
Life Today – Amazingly Normal
Today, although Erik walks on his toes and doesn’t have perfect balance, he excels in his favorite subjects at school. In the words of his parents, Erik’s life is “so close to normal that no one would know anything unless told.”
With his brown hair, Erik resembles his father’s side of the family and has a great sense of humor. Sometimes he seems wise beyond his years, but is still a kid at heart who enjoys magic and has a growing collection of piñata parts that even includes Bob the Builder’s head. Erik plays golf with friends in a summer league and often patrols the neighborhood on his bike to see who else is home.
According to his parents, Erik says he remembers “absolutely nothing” about his transplant and seldom asks about it. Just like a typical teenager, he’s concerned with the present and being normal like everyone else.
