SAND SPRINGS, Okla. — A Sand Springs mother is fighting for her infant son and raising awareness about a rare condition giving him just months to live.
“It’s just not fair," said Bailee Wilson. "Not fair at all.”
Wilson’s son, Truitt, was born a few weeks early in January.
“He was beautiful," Wilson said. "He had really long fingernails so we were kind of so we were kind of wondering why.”
At two days old, Truitt developed a blister on his bottom. Doctors weren’t sure why. Possibly an allergic reaction to his diaper or maybe something else.
“By the time we left the hospital when he was three days old he had formed them all over his bottom, his back, his belly," Wilson said.
It wasn’t the diapers. But instead, Junctional Epidermolysis Bullosa Herlitz, or JEB generalized severe. It's a rare genetic condition causing skin to be fragile and blister easily.
“Mostly friction. Heat. You know, like the rubbing of his clothes can cause them," Wilson said.
It also causes blisters inside Truitt’s nose, throat and mouth.
The diagnosis isn’t good. Life expectancy for JEB-H babies is five to six months, most don't live past their first birthday.
Wilson took a leave of absence from work to take care of Truitt, which involves popping and treating the blisters, a daily bath, and wrapping his arms, legs and torso.
“He’s so strong," Wilson said. "It wouldn’t be fair for me to be weak. So I have to be strong for him.”
Now, she wants to raise awareness about JEB. She encourages parents to get tested to see if they carry the gene. She is also selling t-shirts and bracelets to raise money for research.
Meanwhile, she’s treasuring every moment she has with Truitt.
“Hold them tight because you just never know," Wilson said.
While Wilson is trying to raise money for research, the community is raising money for her and her family with a GoFundMe.
Donate to the GoFundMe here. If you'd like to purchase a t-shirt or bracelet to donate to EB research, you can email Wilson at firstname.lastname@example.org.
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