05/15/2014 04:26 pm ET Updated May 15, 2014

Baby Born With Rare, Painful Skin Disorder Gets Help From Family And Friends

A week after Brittany Weingart gave birth to her son, Lane, sores and blisters started popping up all over his body.

The Edinburgh, Indiana, mother told The Indy Channel that her now 6-month-old wakes up with new sores every day, and at least 50 cover his body at any given time. Doctors believe the baby has a condition called epidermolysis bullosa, a painful skin disorder that occurs in 1 of 50,000 births.

Weingart says she follows doctors' orders and pops the blisters as they appear, but they just spread.

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

That's because Lane has yet to receive a definite diagnosis. His suspected condition doesn't have a cure, but doctors said a blood test could confirm the diagnosis and lead to further treatment.

“The diagnosis is important to us because it's scary knowing he has something but not know for sure what it is,” Weingart told ABC News.

After finding out Medicaid wouldn't cover the $3,000 cost of the test, Weingart's family and friends stepped in. They set up a Give Forward crowdfunding page to raise money for Lane.

Weingart is waiting for the test results, but in the meantime, she said she hopes she can help others affected by the disease. She posted the following response on the "Help Baby Lane" Facebook page:

We are so happy to be sharing Lane's story with everyone. Not just for his sake but for everyone out there with the same condition. Whether it be more severe or not. We had never heard of EB before and mostly everyone we know hasn't either. People need to know about it.

Now they do.



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