She’s spunky and independent.
With a radiant smile and infectious laugh.
That’s how you’ll remember four-year-old Blaire. Working her way down the stairs in her bright pink helmet. Striking a pose for the camera wearing her biggest hair bow. Insisting on the tricycle – not the wagon – when she’s outside with her friends.
“We are seeing now there’s no holding her back,” says her mom Leann.
But it wasn’t always that way for Blaire and her parents, Leann and Garon Mosby. A self-described planner, Leann said she had “read all the books, read all the blogs, and did everything possible in preparation for this child.”
Coming from a big extended family and a large circle of friends, Leann had plenty of people to share the journey of raising children. “We were always sharing videos and updates, as proud parents do, and I noticed that Blaire’s developments were always behind,” Leann said. “Since every child develops differently, and I was a first-time mom, I initially considered that I could be overreacting.”
Doctors recommended therapy through the First Steps program, and the Mosbys connected with Michelle Fricks, a St. Louis Arc speech language therapist. Leann continued to push for more testing, and Blaire was eventually diagnosed with Glut1 Deficiency, a rare genetic disorder that impacts brain development.
“I just remember hearing that it was not curable, that just made me numb to hearing anything else,” recalls Leann. “That was the scary part, when your child has this condition and you don’t know yet what her life will look like.”
The Mosbys turned to Michelle and their “therapy family,” who went into overdrive to find out all they could about Glut1 Deficiency and to connect the Mosbys to the resources they would need.
There was Capable Kids and Families, an Arc program that loaned therapeutic equipment for Blaire and her therapists to try out. There was an Arc family support specialist who had utilized
the ketosis diet – a primary treatment for Glut1 Deficiency — in her own child’s treatment. Arc’s Parent Cafes helped Leann process the emotional experience of parenting a child with
developmental delays. Family educational workshops that Garon attended put them in touch with experts, information and new strategies.
All these resources were built on the foundation of Inclusion, which meant Blaire would have the opportunity to participate in learning experiences alongside all her peers.
Piece by piece, step by step, a support network was built around Blaire, and her parents.
“We were introduced to so many resources that we had no idea existed,” explained Garon. “Getting to network with other parents who are experiencing some of the same challenges has been fundamental in the growth of our family.”
“They supported me in advocating for not only Blaire, but for our family holistically,” added Leann. “Coupling the parental knowledge with the Arc’s supports and resources, we have a recipe for Blaire’s continued success. That partnership between families and their medical and therapy communities is paramount.”
Spunky. Independent. That’s Blaire. Waving at friends, listening carefully when her mom speaks, and even impressing her cousins with an impromptu somersault.
“Every day I look back and think how we really didn’t know if she would walk or if she would talk, and now we have this little girl who is literally turning somersaults with her cousins on a Sunday afternoon,” said Leann.
“With the resources and support we’ve been given, Blaire has the opportunity to become the best version of herself,” Leann concludes. “Because of this, I don’t have to do it all…I can just be her mom and love her!”