Bone marrow transplant offers hope to twins with fatal illness

LAGRANGE, Ohio - The Hurst home looks pretty typical of families who have four children under the age of 8. Furniture moved aside, a living room turned into play room, and big brothers helping out with the babies. Things "seemed" normal too, before Baen and Bryce were born 11 months ago.

"They were totally healthy twins. All their prenatal tests came back fine," Casey Hurst remembered.

But the young mom said the months after they were born, the boys were riddled with pulmonary and GI problems, hernia operations, and then developmental delays. Their primary doctors sent them to a genetic specialist. 

"She read our file and told us she really thought this was going to be an open and close case but as soon as she saw their facial features, she knew it was Hurler's Syndrome," Casey said.

Baen and Bryce have a genetic disorder that shuts down the body's ability to produce specific enzymes. As a result, cells don't perform properly and can cause progressive damage throughout the body, including the heart, bones, joints, central nervous system, and in their case, the respiratory system. If patients live long, they can be confined to wheelchairs and a life of mental handicaps.

The twins' father remembers the diagnosis.

"It was crushing. overwhelming, 'cause when you have twins automatically as babies you try to picture them as they grow up, having families of their own. Then you get a diagnosis like that; it kinda destroys those thoughts. It was hard. very hard," Brian Hurst said.

It's been a rollercoaster ride of hospital stays and surgeries ever since. Enzyme treatments tether them to Cleveland Clinic for six hours every Friday, and soon the biggest adjustment of all. The entire family will move to Minneapolis while the twins undergo clinical trial bone marrow transplants at the University of Minnesota. They will also undergo special enzyme treatments that could decrease mental retardation. There's a 10-20% chance they won't survive it.  

"The bone marrow transplant is their only chance at a somewhat normal life. So our decision is made because we want to give them as much chance as possible, even if there are risks involved," Brian said.

The family leaves Sunday, February 19, together for six months because apart, they said, is not an option.

"We have to make things as normal as possible because we have two more who need normalcy: school, parents who are with them," Casey said.

The Hursts just learned that big brother Brady is a carrier of Hurler Syndrome, so he can not donate his bone marrow. The news is devastating, the family said, because using outside donors decreases the odds of a successful transplant. Four umbilical cord donations have already been procured for the surgeries.

You can follow the Hurst twins' progress and make donations toward medical and travel costs by going to www.hurstbrothersbattle.com .