Collin's Story

Cord Blood Stem Cell Transplant for Patient with Adrenoleukodystrophy

Fall is a busy time of year for Collin Wilmes. He loves school, especially science and history. Depending on the day, he has football, soccer or hockey practice; on the weekends he's cheering for the Green Bay Packers--a team he'd like to play for someday.

But in 2001, Collin's fall was busy with very different activities. At the age of 8, he experienced pediatric onset of adrenoleukodystrophy (ALD), a genetic, neurodegenerative disease.

ALD causes demyelination, or a deterioration of protective nerve tissue, which results in damaged nerve cells throughout the brain. The initial symptoms are behavioral and can progress rapidly to impaired coordination, dementia, seizures and a vegetative state within two years.

Because he was monitored for the condition since birth, Collin was lucky. At the first sign of onset, his doctor referred him to University of Minnesota Amplatz Children’s Hospital Blood and Marrow Transplant Services.

"Our doctor [at another medical center] told us that the University of Minnesota is the ALD capitol of the nation," says Deidre Wilmes, Collin's mom.

Through research on the Internet, Deidre located the University of Minnesota which is home to the International Storage Disease Collaborative Study Group, an international group of researchers and clinicians dedicated to advancing treatment for inherited metabolic storage diseases (IMSDs), including ALD.

Collin underwent an umbilical cord blood transplant proceeded by chemotherapy and radiation at University of Minnesota Medical Center, Fairview and University of Minnesota Amplatz Children’s Hospital.

"Everyone at the hospital is very willing to tell you about the procedures and risks; they're very informative," Deidre says. "Everyday, they give you printouts of any information you want. It was also good to get to know the other kids and families, and, more importantly, to trust the doctors."

During his stay at the nearby Ronald McDonald House following his transplant, Collin enrolled in Minneapolis Public Schools to keep up with his classmates in Mankato. At his two-year check-up, his engraftment was secure and he passed all the tests with flying colors.

When asked if he had any advice for other kids needing a transplant, Collin is both positive and realistic. While the transplant itself can be difficult, a second chance at life is well worth it.