ABC News’ BRIAN O’KEEFE reports:
For the Durkins of York, Maine, the ice hockey rink was like a second home. All three siblings — Jason, Chris and Lauren — grew up on the ice and parents Sharon and Mike were always rooting them on from the sidelines at matches and practices.
But a place of so many memories would become the site of the family’s first major crisis when oldest son Jason was pulled aside at hockey tryouts back in 2006.
“His coach realized that Jason wasn’t keeping up,” mother Sharon Durkin recalled. “And something just didn’t seem right.”
A blood test with the family doctor only intensified the growing drama. Then 18-year-old Jason was diagnosed with myelodysplastic syndrome or MDS, a rare blood disorder that affects the bone marrow. Doctors came to learn Jason had been suffering from MDS for some time and urgently needed a bone marrow transplant.
Within a week, good news and bad news arrived, doubling the family’s crisis; Jason’s brother Chris would be a perfect donor match except a blood test showed that Chris also had MDS. The Durkin boys were now both in need of bone marrow donors and transplants.
“That was a tough night. Let’s just say a very, very tough night,” Sharon recalled.
Seventy percent of patients don’t have matching donors in their families and need to find an unrelated adult donor, or cells from donated umbilical cord blood, according to Be the Match, an organization that helps match marrow donors to recipients.
Click HERE to find out more about blood marrow donation and sign up for a registration kit from the Be the Match Registry.
In March 2007, Jason found a donor from Germany, and a few months later, his brother Chris also found a match. Both went on to have successful bone marrow transplants, although not without complications. Because they were children, both teenagers needed to be quarantined for a full year to protect them from further illness and infections, which meant no physical contact with others outside the home.
The roller coaster ride for the Durkins was filled with ambulance rides and ICU visits. But even as their family battled the double dose of MDS, they maintained their positive outlook, encouraging thousands to become bone marrow donors, organizing drives to raise awareness and charity events to increase donor registration.
A Third MDS Diagnosis Shocks Family, Friends
Just when family and friends though the family had put the medical drama behind them, another painful chapter came, this time for younger sister Lauren, then 15 years old.
After two years of watching her brothers climb back from their transplants, Lauren, whose prior annual test for MDS had been negative, was diagnosed with the disease in 2009.
“We were heartbroken,” Mike Durkin said.
Others felt the same way.
“At first I was in disbelief and was like, ‘This has to be a mistake.’ How are we going to get this family through this?” said Julie Waitt, a transplant nurse who cared for all three Durkin children at the Dana-Farber/Children’s Hospital Cancer Center in Boston.
With the third diagnosis, the Durkins learned that the children had a genetic form of the disorder, which is extremely rare. The Durkins are helping the National Institutes of Health and Sciences in Boston learn more about MDS — a gift born from their struggle.
“There’s a lot the Durkin children have taught us about MDS in families … and MDS in general,” said Dr. Michelle Lee at the Dana-Farber/Children’s Hospital Cancer Center in Boston.
Despite the many registration drives, Lauren couldn’t find a donor match. She had a blood cord transplant of stem cell instead, and it saved her life.
Lauren’s battle led her family to its darkest moment. She had a very high fever for two days and an infection that was out of control. The Durkins were preparing for the worst.
“I think in the back of my head I was afraid I might not make it, but I tried not to think of it,” Lauren recalled.
Lauren pulled through, drawing strength from her family and courage from her brothers who overcame the disease.
The family’s story has served as an inspiration for the doctors and nurses who cared for the children. Each child was hospitalized for several months.
“They should have a plaque on the wall of Six West that says, ‘Durkin Family,’” Waitt said. “They mean so much to all of us.”