The Muscular Dystrophy Association is leading the fight to free individuals & the families who love them from the harm of muscular dystrophy & related muscle debilitating diseases that take away physical strength & life.
“It’s OK to be in a wheelchair, and it’s OK to be who you are,” Faith says. “You can do anything, whether or not you are in a wheelchair. If you want to play sports or just hang out with your friends, you can do it all.”
Hometown: Waco, Texas
Diagnosis: Spinal muscular atrophy type 2
Faith Fortenberry is an energetic 7-year old who loves to dance, cheer and play softball.
She lives with spinal muscular atrophy (SMA) type 2, and represents a new generation of MDA children who are now benefitting from the FDA-approved drug Spinraza, which has been heavily supported over the years by MDA funding. In Faith’s case, Spinraza is already having a tremendous impact on her life. “It has been a game-changer,” says her mother, Leeann. “She can now lift things, hold a glass, and brush her own teeth, which she was not able to do before. More importantly, she is able to breathe better.”
Spinraza has helped Faith stay out of the hospital, which has not only enabled her to take on a busy travel schedule as a national ambassador but also might very well have saved her life.
“Her lungs were so weak before that whenever she had sniffles she had to go to the ICU,” Leeann says. “Now she’s breathing deeper and longer. She’s coughing now — she never was able to cough, or even sneeze. It’s been huge for her.”
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