ELIRIA, Ohio – Scarlett Wallace is a fighter.
“She shouldn’t have lived to see birth,” said Jill Wallace, Scarlett’s mom.
It makes every kiss with her mom special.
At the 32nd week of pregnancy, the doctors made a fateful 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.
A rare genetic disorder prevents Scarlett’s body from breaking down carbohydrates.
“She has cramps, she has scoliosis, she has two feeding tubes,” Wallace said.
She also has hearing loss, cannot speak, and is confined to a wheelchair.
“When she got home from the intensive care unit, I felt very alone, very alone,” Wallace said.
Wallace and her family found a community they never knew they had with Connecting for Kids.
“I think it’s hard for us to realize how much support and help we all need. You don’t really know what it’s like until you’ve really lived it,” Wallace said.
A local non-profit organization selects families with a shared experience of raising children with developmental disabilities.
“Having a tribe of other parents who live very similar lives is priceless,” said Joellen Podoll, Connecting for Kids.
Connecting for Kids hosts events for families with a library, offers one-on-one support, and hosts resource fairs every March.
“Could this resource be a mental health provider, a physical therapy provider,” Podoll said.
Education and awareness is meant to go far beyond families living with developmental disabilities, a topic that can be difficult to talk about.
As for Scarlett, who is now eight years old and many children with PDCD never reach that milestone, her journey inspires others through her Just Keep Swimming with Scarlett Wallace Facebook page.
“I’m trying to do it from her point of view. If she could talk, what would she say,” said Jill Wallace.
Wallace said her daughter loves music, her Girl Scout troop for special needs kids, and she signed up for spring baseball.
“Just because she can’t talk and maybe can’t use her legs to run doesn’t mean she doesn’t like screaming, playing and giggling like all other kids,” Wallace said.
Although she doesn’t know what the future holds for her, which is frightening, Wallace takes comfort in knowing that despite not speaking, her little girl has learned to say one important word: “mom.”
“It’s great because it makes us feel like I’m doing something right. From the moment I saw her, I knew that I needed to accept her, protect her and be her support, her right hand, to give her the best possible life,” Wallace said.
This Saturday, March 25, the third and final Connecting for Kids Community Resource Fair will be held in Rocky River from 11:00 am to 1:00 pm.
It will be held at the Don Died Community Center, 21016 Hilliard Blvd, Rocky River.