Edinburgh family of baby born with rare skin disease hopes for answers

Family raising money for testing, treatment

EDINBURGH, ind. - A disease that affects only one in 20,000 births has hit close to home for one family in Edinburgh.

Lane is 6 months old. His mom says he is sweet and mild-tempered, but he wakes up every morning with dozens of blisters and sores all over his body.

"Not even a week after he was born he started getting blisters around his mouth and as he got older they progressed to different parts of his body," Lane's mom Brittany Weingart said.

Lane's doctors suspect he has a rare disease called epidermolysis bullosa, which makes his skin extremely fragile and prone to blisters.

At any given time, he could have as many as 50 sores on his hands, feet, head -- even on the inside of his mouth.

Weingart never knows how many new blisters Lane will wake up with, but every morning she does what the doctors recommend: she pops the blisters and covers them.

He cries and she comforts him as best she can.

"He just cries. They say the only thing we can really do for the pain right now is just baby Tylenol," Weingart said.

Weingart said Medicaid is unwilling to pay for a $3,000 test to confirm his diagnosis. She wasn't sure where the money would come from until family and friends began fundraising for their cause.

"Not even a month and I've already got over how much I needed for the blood test and people just keep giving," Weingart said.

The test results will not be ready for another three months.

Questions remain, but so does a new-found confidence that Lane and his family can weather whatever comes next.

Weingart said a confirmed diagnosis will bring her peace of mind, but the disease has no cure. That means if doctors are right, Lane will likely be in for a lifetime of difficulty.

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