ABILENE, Texas (KRBC/KTAB) – Josiah Trego just turned 9 years old, but doctors said he wasn’t supposed to live past 2.
“The guy called me over the phone and was like, ‘Yeah, Google Pachygyria,” his mother, Elysha Trego, said.
The disease is so rare, she said the first doctor she saw didn’t know where to begin, but they would find out later it wasn’t that at all.
“He’s got Lissencephaly, which is worse,” she said.
Lissencephaly is also known as smooth brain disease.
“How ours has a bunch of grooves and whatnot, Lissencephaly brains do not,” she said.
And life has been far from a smooth ride for Josiah, who suffers upward of 100 seizures a day.
“Every morning he wakes up, he seizes, like right upon awakening. And even at night. We don’t know how many he has at night,” she said.
Elysha never mentioned raising funds to help find a cure or help pay for medical bills, she just wants to raise awareness.
She will soon be meeting with the mayor’s office, who is expected to sign a proclamation recognizing Sept. 8 as Lissencephaly Day in Abilene.
“I feel like it needs to be recognized just like autism, just like everything else. He’s defied the odds, and he doesn’t get the recognition,” Elysha said.
Elysha says she’s in talks with the State of Texas and other moms to help it get recognized across the state.
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