PITTSVIEW, Ala. (WRBL)— Defying prognoses and serving the community, that’s what one east Alabama family is doing every day.
Only one in 100,00 babies are born with lissencephaly. Three years ago on Oct. 21, 2019, one Pittsview, Ala. resident became the one.
Meet Sophia Nichols. One month after she was brought home, doctors diagnosed her with what is called micro-lissencephaly also known as ‘smooth brain.’ In Sophia’s case, a genetic disorder that caused the folds in her brain to stop developing during pregnancy.
“The first time we ever heard about that was when the doctor walked in and told us she had it,” Sophia’s father John Nichols said.
“It was very scary because we’ve never heard of it before, and when I Googled it, it was like a ten-year life expectancy,” Sophia’s mother Nikki Nichols said. “A lot of people say that they were told that their child would not make it past two years old. So, every day is a miracle.”
Sophia’s symptoms manifest as seizures, spasms, developmental delays, and difficulty eating. Nikki says Sophia’s typical day consists of six medications, feeding through a gastrostomy tube, naps, therapies, and playtime. Both John and Nikki say Sophia has taught them, and doctors a lot about her diagnosis; however, there is still room to learn.
“It almost seems like we’re constantly calling the doctor saying, ‘hey can you change her prescription for what formula she’s on because this isn’t working.’ And then he does it, then we start getting it in and then that stops working. It’s just a challenge to learn what works, what doesn’t work, because it changes every day,” John said.
Despite nearly around the clock care, caring for three other children, creating their own formulas for Sophia, driving to Savannah, Ga. for doctor’s visits and doing everything they can to learn more about her condition both John and Nikki still find the time to volunteer at their local fire station.
“It’s just one more thing that we can do together. I think it’s great. It’s fun. You know, we can increase our teamwork together and be a team helping each other out, helping other people out in the community,” John shared.
Fire Chief of the Pittsview Volunteer Fire Department Angie Hartgrove says they are the first couple to volunteer together, and their dedication to the community is inspiring.
“It means everything. It really does. I mean, because I know if they’re able, one of them will at least be there. That’s what it takes is people showing up and the heart to help others,” Hartgrove said. “I mean, it goes back to what if no one answered?”
“I put that that family or that person in my family’s shoes and you know, what would I expect somebody else to do,” Nikki said.
Nikki and John are also looking to further doctor’s understanding of lissencephaly by working towards joining clinical trials.
WRBL will have more on Sophia’s story and the Nichols family on News 3 Saturday Morning starting at 8/7 CST. We’ll learn why the family frequently travels to Savannah, Ga. and hear from Sophia’s sisters.