Health News

Courtesy the Durkin Family(NEW YORK) -- 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.

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.

Just when family and friends thought 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.

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.

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.

Copyright 2012 ABC News Radio