Glenda Thompson is a proud grandmother who will stop at nothing to ensure her grandson lives a comfortable life.
4-year-old Cole Thompson is suffering from a rare genetic disorder called spinal muscular atrophy (SMA), which affects approximately 1 in 10,000 people. The disorder causes mild to severe muscle weakness and degeneration. The types of spinal muscular atrophy vary based on the age in which the condition developed. To learn more about SMA, click here.
Though there isn’t a cure, the FDA has approved a drug used to treat it. Glenda is doing all she can to let Cole live a comfortable life. She’s done an excellent job of caring for him up to this point, and has no plans of stopping.
Glenda remembers how Cole never liked to support weight as a baby. She sensed something was wrong when he was 12 months old and wasn’t able to stand, missing several developmental milestones.
On October 2015, he was diagnosed with SMA, and is now being treated at Nationwide Children’s Hospital in Columbus. Glenda has become a hardcore networker and as a result, has met several families all dealing with the same disorder. She found people in Mansfield, Norwalk and Galion, who can all relate to the challenges that come with SMA.
When the FDA approved of the drug Spinraza in December 2016, she was filled with a rush of hope. Cole’s doctors began to immediately administer the treatment. The drug is injected through the spine, removing spinal fluid and replacing it with Spinraza. The medicine is meant to stop the spread of the disease, and after a third dose, Cole is finally able to hold up his head. He also doesn’t face as much fatigue as he used to. The drug is working.
Cole’s life consists of regular visits to therapy. He spends most of his time either on a wheelchair or crawling around the house on all fours. With this new drug, Glenda thinks a better life is in store for Cole.
“I cried when I heard the news about Spinraza’s approval,” she said in an interview with the Mansfield News Journal. “Just the thought that there was going to be something available for him … I had got myself prepared that he wasn’t going to be with us forever.”
To read more about this story in the Mansfield News Journal, click here.