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.
Megan was there to help with Owen so Darlene and Jason could grab some food, a nap or a shower without worry. “We knew Owen was in good hands with Megan,” says Darlene. “She would read to him, play games or just sit with him while he slept.”
Nance was Dylan’s Care Partner. She would come to the Ronald McDonald House and watch all three boys so Darlene and Jason could go out to dinner. Nance even made a donation to Children’s Cancer Research Fund in honor of the boys.
Recovery, baseball, and track
Today, all three boys are doing well and are preparing to play baseball. Owen, now 8, has some memory issues and trouble with reading and writing, and he has developed asthma, but he is a very active 8-year old, according to Darlene.
Dylan, 15, lost some hearing and some reflex in his legs, but he ran with the track team and went to his first Homecoming dance last fall. He is learning to play the guitar.
So far, Jacob’s MRIs have been clean, but the worry doesn’t stop. “We will be going in for an MRI again soon, and I pray that it comes back clean,” says Darlene. “It is a constant worry, and we dread each time we have to go.”
The most difficult part of this health care journey has been the fact that her children did not seem or look sick, according to Darlene, “but what was going on inside their bodies was a different story. This experience has made our family so much stronger and much more aware of how precious life is.”