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Patient Stories

When Riley was born, she was diagnosed with a rare bone dysplasia that made her bones irregular in size and shape. As she grew, the dysplasia began to manifest itself in her spine, and she was diagnosed with congenital kyphoscoliosis at just one year old. For the next five years, Riley saw a specialist in Massachusetts and had to wear a brace for over 18 hours a day for six years. When Riley’s family moved to Pennsylvania for a new opportunity, they were referred to the amazing team at Nemours Children’s Hospital, Delaware. There, they met with Dr. William Mackenzie, who continued to provide Riley with the best care possible. As time went on, she had to undergo several casts, and implantation of magnetically controlled growing rods. This surgery, a complex procedure performed by both Dr Mackenzie and Dr. Suken Shah, pediatric orthopedic spinal surgeon, was successful to maintain the […]

When Riley’s father noticed a slight curvature in her spine, they decided to have it checked by a doctor. They headed to Nemours Children’s Health, Jacksonville where Dr. Neal diagnosed Riley with scoliosis in the summer of 2015. Scoliosis is a medical condition in which a sideways curvature is found in the spine, causing issues such as back problems and discomfort. When Riley was diagnosed with scoliosis at age 12, her spine curvature was about 25 degrees. Riley went through periods of wearing braces to try and correct the curvature. Unfortunately, the braces weren’t producing the results she had hoped. As she got older, the curvature continued to worsen to about 50 degrees. When she was 14, Riley decided to stop treatment and wait for spinal fusion surgery until she felt ready. By age 18, Riley’s pain grew stronger, and she decided it might be time for the surgery. Riley […]

Follow Maggie’s incredible journey of strength and resilience as she overcomes scoliosis, from diagnosis and treatment to recovery and personal growth.

Scoliosis is a condition that affects the curvature of the spine and can be a challenging diagnosis for anyone to receive. For the Downing family, this diagnosis became a reality when their son, Smith, was only 15 months old. When Smith’s mother noticed asymmetry with Smith’s back, the Downing family sought out medical advice. After completing an MRI scan, the results confirmed that Smith had idiopathic infantile scoliosis with a 56-degree S-curve.   Smith’s scoliosis was also progressing. The Downings were concerned that if it were to continue at a high rate, Smith’s Smith’s scoliosis was also progressing. The Downing’s, who knew little about scoliosis at a toddler’s age, began to research as much as possible. They reached out to several doctors and hospitals but found little comfort in the limited options for correction. Most options presented to them by physicians included surgery with high complication rates, until they met Dr. […]

At three years old, Willie was diagnosed with infantile idiopathic scoliosis, a condition that caused a curvature in his spine. Willie’s journey began when his mother, Breana, took him to see several specialists because he wasn’t hitting developmental milestones on time. Willie started walking and crawling later than other children his age. He also began to experience chest pain and shortness of breath. At first, Willie’s specialists thought he might have cerebral palsy or multiple sclerosis. It wasn’t until they went to Nemours Children’s Health in Jacksonville that he was diagnosed with scoliosis. Willie underwent a rigorous treatment plan that included wearing a halo and using traction to stretch his large curve before surgery, a rare process reserved for special cases. He also had many occupational and physical therapy sessions. With the help of Dr. Kevin Neal, Willie is in complete recovery at 10 years old. It was a tough […]

Madelynn was 7 days old when the pediatrician called her mom, Rebekah, around 6pm in the evening (never a good sign). Rebekah knew right away that something was amiss. The pediatrician mentioned cystic fibrosis and said they should do some testing on baby Madelynn. She was 14 days old when she went for her first sweat test. Rebekah was petrified holding her newborn while electromagnetic currents were taped on Madelynn’s arm. Then, they had to sit in a hot room, hoping for Madelynn to produce enough sweat to test for sodium chloride levels. The waiting was awful. Early the next morning, they received a call from the pediatrician, stating they had a 3pm appointment with the pulmonologist. This is when Madelynn’s journey with CF began. When Madelynn was 7 years old, her family found out that one of her original CF doctors was retiring. Additionally, her family had recently moved to […]