When you are a child, you feel like you have all the time in the world. When you become a parent, you realize this isn’t true. Your own children grow up way too fast. And when your child has FSH muscular dystrophy, this is not only poignant, but heartbreaking, as Julie testified at the Voice of the Patient Forum. Her son Noah was diagnosed with the FSHD four years ago, at the age of 10.
Unable to keep up with his peers in sports, Noah gave up basketball and baseball. He joined the Boy Scouts and band, but his FSHD limits him. He was unable to pass the swim test or carry a heavy backpack for an overnight camping trip. His mouth weakness ruled out most of the band instruments, but he discovered a love for percussion. But as he enters high school, his mother knows joining the marching band will be challenging if not impossible.
“There are many limitations that Noah has, and FSHD impacts his life in so many ways,” said Julie. “As his mother, it is heartbreaking when classmates draw attention to the fact that he is unable to smile.”
“As parents, like all parents, every decision made is done with the intention of giving our children a better future,” she said. “Given the opportunity to find a cure for FSHD, we would do whatever it takes for our son…Any treatment that would stop the progression of the disease would benefit him so greatly. If we knew that the disease would no longer cause future muscle loss, then he could focus more on building up the weak muscles and strengthening what he does have.”
“Every year we’ve noticed progression of the disease. Noah is on a path to real medical and physical limitations,” she worried. “If a therapy is shown to be effective, implementing it as soon as possible can mean all the difference between reversible and irreversible changes.”
How would treatments to slow or stop FSHD change your life or the life of your loved one? Please share your thoughts in the Comments section.
This is an excerpt from testimony in the Voice of the Patient Report.