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Rare skin condition causes excruciating pain for Tucson boy

Posted at 4:48 PM, May 20, 2018
and last updated 2018-05-20 20:06:25-04

Doctors say for a Tucson boy who just turned one, there is no way around the excruciating pain that comes from a baffling disease.

There is a one in a million chance of being born with Epidermolysis Bullosa, or EB, a rare condition that causes the skin to be so fragile, it tears like tissue paper, blistering and scarring to the touch.

The family of this baby boy is asking for your help to fight this rare disease.

Elijah Henshaw was born with the little-known genetic skin condition, EB. It is described by doctors as "the worst disease you have ever heard of."

EB affects three layers of skin and is compared to living with third-degree burns. Children with EB are known as "butterfly children" because their skin is so fragile it can blister from the slightest touch.

"This [blister] he woke up with," Elijah's mother, Jaycee Henshaw, said. "He wakes up with some on his hands, on his mouth or teeth too. Every second with this kid can change everything."

Jaycee says she and her husband have to take care of the blisters by popping them and making sure they don't refill. She said her baby boy fights with her with everything he has, kicking and sometimes even screaming, as she tries to keep him still.

This condition has affected the couple's lifestyle. Jaycee can only work a part-time job and her husband Jonathon stays home to make sure Elijah gets proper care.

That is why they are asking for your help. The family has set up a GoFundMe account and they say anything will help their family get by.

They also ask you to follow Elijah's journey on social media so they can spread awareness. The family hopes that in the long run, a cure can be found.