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Orthopedics

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 […]

Micah’s journey began with some unexpected twists and turns, before he even entered this world. “Before Micah was born, we received the news that he might have Down syndrome through routine blood work during pregnancy,” shares his mother, Kaitlyn. “It was a whirlwind of emotions, but we leaned on the support and expertise of Nemours from the very beginning.” Kaitlyn’s family have been seeing providers at Nemours Children’s throughout the Delaware Valley ever since her firstborn arrived prematurely. Her GYN office recommended Nemours Children’s, and they found the care to be exceptional, so they continued with Micah’s treatment there. It was his team at Nemours that diagnosed Micah with Trisomy 21, commonly known as Down syndrome, along with clubfoot and a cardiac concern – coarctation of the aorta. Nemours became their beacon of hope, with a multidisciplinary team ready to address Micah’s complex needs. From the Trisomy 21 Clinic to […]

When Julieta was just 1 month old, she was diagnosed with Spinal Muscular Atrophy type 1 (SMA Type 1). SMA is a rare genetic condition that causes muscle weakness and atrophy, significantly impacting Julieta’s ability to walk, sit up, and control her head movements. It also affected her ability to speak and eat. Julieta’s mother, Melissa, recalls the initial shock and heartbreak that accompanied the diagnosis: “After I got the call with her results, I was told by five neurologists that she was not going to make it past 1 year of age. Obviously, this put me in a sad and grieving mental state. We as a family were devastated.” Shortly after receiving her diagnosis, Julieta was referred to Nemours Children’s Hospital, Florida by a neurologist in Miami. “After I visited Nemours and felt finally safe and with big hopes for my daughter, I went back to Dr. Miller in […]

Riley’s diagnosis with cerebral palsy became apparent when her family noticed she wasn’t hitting the typical milestones. “I was not walking at 18 months old,” she recalls. “It was recommended that I have an evaluation by PT and OT specialists after seeing my pediatrician,” leading to her diagnosis of cerebral palsy shortly after. Prior to treatment at Nemours Children’s Hospital, Delaware, Riley faced the challenges of cerebral palsy. “I had very big bunions on both feet, which made walking and running long distances very painful,” she shares. “I had a very limited range of motion due to my CP, that made running, walking, and swimming difficult on my muscles. I couldn’t wear a lot of shoes, like sandals and flats.” However, Riley’s life took a turn for the better when she discovered Nemours Children’s in Wilmington, Delaware through the recommendations of peers who had undergone similar journeys. “My family found […]

For elite gymnast Maddy, the journey to greatness wasn’t without its hurdles. But with determination and the expert care at Nemours Children’s Health, Maddy is back on her feet, ready to conquer the mat once again. Maddy’s athletic career took an unexpected turn on January 25, 2023, during a routine practice session at Temple University. A gymnast on the collegiate team, she faced a setback that would challenge her both physically and mentally—a ruptured Achilles tendon. Before receiving treatment at Nemours Children’s, Maddy experienced the full weight of her injury. “I was unable to walk, move my foot in any direction, and do everyday activities like go to class,” she recalls. “I was also in an abundance of pain every day that led to many mental breakdowns.” Having received treatment from Nemours Children’s Health, Jacksonville for years growing up, she knew she would get exceptional care for her new injury. […]

Alek is a courageous patient whose journey with severe kyphoscoliosis led him across the globe to Nemours Children’s Hospital, Delaware. Kyphoscoliosis is a dangerous condition that affects the spine. It causes an abnormal curve in two directions, side to side and front to back. It is a combination of two other conditions: kyphosis, which causes a severely rounded appearance of the back, and scoliosis, where the vertebrae form a curvature instead of being straight. Alek’s diagnosis unfolded in Poland in 2010 when he was a young boy. The road ahead seemed daunting as his condition gradually worsened. “Before starting treatment at Nemours Children’s, Aleksander’s condition was very bad,” shares his family. “He had trouble with breathing and couldn’t eat and walk. He lived in chronic pain.” It wasn’t until after a failed operation in Poland that Alek’s family discovered Nemours Children’s. Referred by their physician in Poland, Alek and his […]