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A step closer to treatment for St. Johnsville baby with rare condition

By BENITA ZAHN, WNYT News

ST. JOHNSVILLE, N.Y. (WNYT) - Jackson Baldwin, of St. Johnsville, is a cherubic faced 6 month old who suffers from a rare, genetic disorder known as epidermolysis bullosa or E.B. for short.

The slightest friction can cause his skin to blister. His case is so severe he can't tolerate eating food so he's fed through a tube. The gauze protecting his arms and legs guards against infection and prevent his fingers and toes from fusing together.

"We're not sure if Jackson is going to be able to walk as it is, because his heels haven't healed since birth," said Jackon's mom, Jessica.

Jackson's mom, Jessica, has learned to keep him safe and deliver the pain medications he needs to keep him comfortable. Her apartment looks like a mini store room with the goods necessary to protect Jackson's skin. But it's not enough, because time isn't on his side.

"Depending on how severe it is, most children don't live past the age of one," Jessica said.

On her own, Jessica searched for a cure and found that the University of Minnesota Amplatz Children's hospital performs bone marrow transplants for children with E.B.

She reached out to the hospital and Jessica says the folks in Minnesota told her they would contact Medicaid, Jessica's insurer. Even with family helping out, there's no time for her to work outside the house.

"Months went by and they said, we keep running into dead ends," Jessica said. "We've contacted everybody, all the phone numbers for Medicaid and they said they got nowhere."

In frustration, she reached out to local lawmakers who started asking questions and within the week she heard from medicaid with some answers.

"Medicaid never told us, 'oh, well, Jessica this is what you need to do. You need to find a referring physician and you need to tell them to write a letter to us and send all the appropriate documents.'"

Now that she's got a map to follow, things are starting to fall into place.

"I would do anything for Jackson," she said. "I want to see Jackson happy, not hear him crying everyday."

One of the doctors involved in Jackson's care has recently said it appears likely that Medicaid will approve the treatment now that Jessica's involved a doctor to act as the go-between.

This is not the kind of situation you can do without a referring doctor. Minnesota and Medicaid are working diligently on this case and it's not clear where things went off track.

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