Tucson boy suffers from rare skin disease that makes it hard for his parents to hug him

- A young Tucson boy is suffering from a very rare skin disease that makes it difficult for his parents to hug and hold him.

"He's still a one year old little boy and he wants to do one year old things. He's just limited," said Elijah Henshaw's mother Jaycee.

Elijah was born with a condition called Epidermolysis bullosa, or EB.

"Never in a million years would you ever think that this could happen, let alone happen to you," said Jaycee.   

EB is a genetic mutation that causes a protein in a person's DNA to not function properly. The rare skin disease causes Eljah's skin to rip, peel and blister very easily, and it can happen by just touching him. 

"You can see his lip has one. His tongue has one. He'll get them on his neck from his collar," said Jaycee. "He wakes up with them. He woke up with a couple of the them on his head."      

Jaycee and Jonathon Henshaw spend most of their day changing bandages and cleaning Elijah's sores. They spend a couple of hundred to a couple of thousand dollars per month on medical supplies.

"We've got boxes and boxes of all of the stuff that we use to protect him," said Jonathon. "We've got wraps, puppy pads that we use to change bandages on him in case he bleeds or puss from his blisters. Just an array of different stuff. Burn creams, anything you can think of that can help his skin."

There's currently no cure for the disease, but the two are hoping more research can be done so one day, that can change.

"There's no way to tell at least right now, but as it stands with our knowledge, this is constantly going to be his skin," said Jonathon.


Epidermolysis Bullosa information by Mayo Clinic
https://www.mayoclinic.org/diseases-conditions/epidermolysis-bullosa/symptoms-causes/syc-20361062

Epidermolysis Bullosa information by National Institute of Health
https://rarediseases.info.nih.gov/diseases/6359/epidermolysis-bullosa

GoFundMe for Elijah Henshaw
https://www.gofundme.com/fight-with-eli

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