ELYRIA, Ohio — Scarlett Wallace is a fighter.
“She wasn't supposed to live past birth," said Jill Wallace, Scarlett’s mom.
That makes each smooch with her mom extra special.
At 32 weeks pregnant, doctors delivered a life-changing diagnosis.
"Her official diagnosis is pyruvate dehydrogenase complex deficiency syndrome. I've never been a mom before, let alone a special needs mom," said Jill Wallace.
The rare genetic disorder prevents Scarlett's body from breaking down carbohydrates.
"She has seizures, scoliosis, she has two feeding tubes," said Wallace.
She also has hearing loss, is nonverbal, and is wheelchair-bound.
"When she came home from the NICU, I felt very alone, very alone," said Wallace.
Wallace and her family found the community they didn't even know they needed through Connecting for Kids.
"I think it's hard for us to realize how much support and help that we all need. You don't really know how it feels until you really lived it," said Wallace.
The local nonprofit matches families with shared experiences raising children with developmental disabilities.
"Having that tribe of other parents who are walking very similar lives is just invaluable," said Joellen Podoll, Connecting for Kids.
Connecting for Kids hosts library speaking engagements for families, offers one-on-one support, and holds resource fairs every March.
"Whether that resource might be a mental health provider, a physical therapy provider," said Podoll.
The education and awareness are designed to go well beyond the families living with developmental disabilities, a topic that can be tough to talk about.
As for Scarlett, who's now eight, a milestone many children with PDCD never make, her journey is inspiring others through her Just Keep Swimming with Scarlett Wallace Facebook page.
"I try to do it from her viewpoint. If she could talk, what would she say," said Jill Wallace.
Wallace said her daughter loves music, her Girls Scout troop for children with special needs, and she signed up for spring baseball.
"Just because she can't talk and she might not be able to use her legs to run, it doesn't mean she doesn't enjoy the yelling and playing and the giggling just like all the other kids," said Wallace.
While she doesn't know what the future holds, which is scary, Wallace takes comfort in knowing despite being non-verbal, her little girl has learned how to say one important word: "mama."
"It's great because it makes us feel like I'm doing something right. I’ve known from the moment I saw her that I needed to accept her and advocate for her and be her support, her right-hand man to give her the best life possible," said Wallace.
Connecting for Kids will be hosting its third and final community resource fair this Saturday, March 25 in Rocky River from 11:00 a.m. until 1:00 p.m.
It will be held at the Don Umerley Civic Center, 21016 Hilliard Blvd, Rocky River.
