The Cooper family has a big blue ribbon on the front porch of their Alexandria home.
Heather Cooper loves when people ask about it because it gives her an opportunity to talk about her youngest son, Gannon, and educate them about the rare disorder he lives with.
Gannon, 8, was diagnosed with tuberous sclerosis complex (known as TSC) shortly before his first birthday.
TSC is a rare genetic disease that causes non-cancerous tumors to grow in the brain and other parts of the body.
Over the years, Gannon has gone through several brain surgeries and lives with epilepsy. There is no cure for the disease, but with medication to control his seizures and careful observation by his medical team, he is currently stable.
A third grader at Northridge Elementary, Gannon has spent this summer swimming, playing video games, jumping on the trampoline and riding his bike.
“He’s made so much progress,” Heather said. “He’s my miracle, for sure.”
Gannon began receiving Early Intervention from the Licking County Board of Developmental Disabilities around the time he began having seizures at 11 months. The therapy he received helped him learn to walk when he was 19 months old.
The TSC and its impact on his brain affects his speech and motor control. He works hard during the physical, occupational and speech therapies he receives at school and enjoys using music to learn.
With Family Support Services (FSS) funds from LCBDD, his family has been able to purchase an iPad, that he can use for learning games, and weighted blankets.
His whole family —Heather, his father James and his siblings, Gabbie, 11, and Gavin, 13 — love traveling to Disney parks.
When Gannon had a wish granted by Make-A-Wish, he decided to go to Disneyland and meet Lightening McQueen from the movie “Cars.”
Gannon also participates in events with A Kid Again, which provides free and low-cost activities to children with life threatening conditions. Over the years, he’s gone to Kings Island, Zoombezi Bay, and Columbus Crew and Ohio State Buckeye games.
He recently got involved with Team IMPACT, which matches children with serious illnesses with college sports teams. He was paired with the Denison University baseball team and has been able to attend games and tournaments and has developed friendships with some of the players.
Having a rare disease can be isolating so it’s important to Heather and James that Gannon is able to experience as many activities as possible.
TSC is so rare that most people have never heard of it, she said. So the Coopers take every opportunity they can to share information.
At Halloween they often hand out cards with facts about the disorder. Now the mayor of Alexandria sends out reminders every year that May 15 is TSC Day and encourages people to decorate their houses with blue, the color of TSC awareness.
Heather is always on the lookout for different programs that Gannon can get involved in, from TinySuperheroes and The Superhero Project to Songs of Love.
Not only does it help spread awareness to these groups about TSC, but it helps connect Gannon to a larger community of children living life with medical challenges.
“It’s nice to know there are people out there who are going through things you are going through,” Heather said.
Photos courtesy of the Cooper family.