Chesapeake baby battles rare condition

Posted at 1:55 PM, May 15, 2015
and last updated 2015-05-15 17:28:15-04

Chesapeake, Va. - Two-month old Colton Gwaltney is one of 20 babies in the United States with Infantile Osteopetrosis.

The  genetic condition is a disorder of bone development, in which the bones expand. The cells that create and balance bones stop functioning and can cause fractures. Without treatment, babies face the risk of losing their vision, hearing, the ability to make cells.

Colton was diagnosed with Infantile Osteopetrosis on April 8. The complications, however, started just days after he was born on February 18.

It started with a lot of congestion. From there, he was wrongfully diagnosed twice.

On one of their last trips back home from the hospital, Jamie and David said the symptoms worsened. Colton had crystals in his urine, which is calcium.

When they returned to CHKD, doctors ran more tests on Colton. They found that he had two broken femurs.

"So they knew something was off because both of his legs were broken and his calcium levels were plummeting," Jamie said.

That's when they got the unthinkable diagnosis: Colton has Infantile Osteopetrosis.

"Once we found out how many broken bones he had, we were terrified to touch him," Jamie said. "My biggest fear is that he's not gonna make it," she added.

Dr. Samantha Verano, a pediatric specialist in genetics at CHKD, says Colton's case was the first they had seen.

"Most of the kids with Osteopetrosis die within the first 10 years of their life," said Dr. Paul Orchard, a  pediatric specialist at The University of Minnesota.

Without a bone marrow transplant, there is no hope.

His pediatric team is one of the only ones in the nation that specializes in the condition, which is why Colton's parents Jaimie Hamilton and David Gwaltney, fought to get him there.

The request for Colton to be transferred to the University of Minnesota was at first denied by Virginia Medicaid. It took two appeals to finally have it approved.

On Tuesday, Colton was on a plane to Minnesota. He is now a patient of Dr. Orchard and on his way to receiving a treatment that could be life-saving.

The next step will be to find a positive match for a bone marrow transplant. Jamie and David were tested and are awaiting approval.