Family And Friends Raise Money For Baby With Rare Disease - KMSP-TV

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Family And Friends Raise Money For Baby With Rare Disease

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Edinburgh, IN- Family and friends are fundraising to help an Indiana mom figure out what's causing her child so much pain.

Brittany Weingart's 6-month-old son, Lane, wakes up with blisters on him every day.

Doctors suspect it is a rare disease called epidermolysis bullosa, which makes his skin extremely fragile and prone to blisters.

At any given time, Lane will have as many as 50 sores on him, all over his body.

All his mom can do is what doctors recommend, pop the blisters and make him feel as comfortable as she can.

"It's very stressful, " Weingart said. “"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.”

His mother says the little boy just cries and all they can do for the pain is give him baby Tylenol.

Weingart says Medicaid is unwilling to pay for the $3,000 test to confirm his diagnosis, so family and friends started a fundraising campaign.

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

Test results won't be ready for another 3-months.

However, Weingart has a new-found confidence that her family can handle whatever comes next.

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