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Joshua, now 6 years old, was diagnosed with SMA Type 1 while still in utero. This condition, characterized by muscle weakness and atrophy, led to neuromuscular scoliosis, which was first observed when he was about 11 months old. He currently receives treatment from Nemours Children’s Hospital, Florida. For the first few years of his life, Joshua’s condition was a constant battle. “Joshua wore a back brace for at least 4.5 years, 24/7, with breaks only for bathing,” recalls his grandmother, Claudia. The brace was necessary to manage his scoliosis, but it made sitting up uncomfortable and exacerbated respiratory issues common in children with SMA. “Every cold or flu he caught turned into a hospital stay and intubation on several occasions,” shares Claudia. “SMA can cause respiratory distress, but the fact that Joshua’s lungs were restricted from growth because of scoliosis made it so much worse.” A pivotal moment in Joshua’s […]

My name is Jillian Franko, and I am 26 years old. I was born with several physical complications including club feet, dislocations of the knees, hips and elbows, and severe cervical kyphosis. As parents, my mom and dad wanted to ensure that I received the best care. They scheduled an appointment for me with an orthopedic specialist, who recommended serial leg casting for my club feet. This procedure meant weekly visits to have my feet repositioned and cast. Not seeing any results from serial leg casting, my mom contacted a local children’s hospital. She made appointments with specialists in genetics, orthopedics, and neurology. Unfortunately, they were unable to determine a diagnosis, and thus, could not provide proper care or treatment plans. Unsatisfied with the outcome of these appointments, my mom contacted the Schuylkill County Society for Crippled Children. She spoke with the organization’s director, who informed her of their free […]