Owen and Dylan’s Story: Surviving Adrenoleukodystrophy

Parents don’t always want their children to carry on family traditions. Jason and Darlene knew that adrenoleukodystrophy (ALD) ran in their family because Darlene’s older sister had lost two sons to the disease.

“When we found out that all three of our boys, Owen, Dylan and Jacob, had it, we were devastated,” says Darlene. “We felt like it was a ticking time bomb not knowing if or when it would go off.”

None of the boys exhibited any signs of illness, but they diligently had MRIs every year. Each time, the scans came back clean—until April of 2006. “When the boys were done, our doctor said she needed to talk to us,” remembers Darlene. “My heart sank.” Sure enough, Owen’s MRI showed deterioration. “Right at that moment, our whole world changed,” she says.

Treatment in the hands of experts

Owen was five years old when he was diagnosed. The family came to the University of Minnesota at the suggestion of their physician, who said the university doctors were experts with ALD and bone marrow transplants, “We wanted nothing less than the experts to treat Owen,” Darlene says. Owen was admitted to the University of Minnesota Masonic Children’s Hospital on July 25th 2010, on August 4th he received a stem cell transplant of double units of umbilical cord blood.

During Owen’s hospital stay, the older boys were due for their six-month MRI. It was during this checkup that they discovered Owen’s brother Dylan, would need a transplant, too. “This was beyond devastating,” says Darlene. “We had one child in the hospital recovering from a transplant and another that needed one, too!” Dylan’s transplant took place on October 4 with bone marrow cells from a live donor.

“In good hands” with Care Partners

Darlene remembers how much she and her husband relied on the help they received from two Care Partner volunteers, Megan and Nance. Care Partners is a Children’s Cancer Research Fund quality-of-life program that provides non-medical support to patients and their families.