Experience the remarkable journey of Jeremiah, a baby with a rare genetic disorder, as his family finds hope and the best care at Nemours Children’s Hospital.
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Orthopedics
Scoliosis Awareness Month: Abigail’s Story
Abigail is a 16-year-old girl who was diagnosed with scoliosis when she was in middle school. It was during her annual health visit when her spine caught the doctor’s attention. Abigail’s mother, Serena, took her daughter to see an orthopedic specialist at Nemours Children’s Health, Jacksonville, where they met with Dr. Kevin Neal and were told that Abigail had scoliosis. Initially, no further actions were taken as the scoliosis wasn’t severe. However, about a year had passed when Abigail started experiencing more pain and her posture worsened. So, they went back to Dr. Neal at Nemours Children’s and Abigail was put into a TLSO brace. The care team at Nemours played a vital role in Abigail’s treatment. “Mike, in particular, was fabulous,” says Serena. Michael Wright, Director of Prosthetics & Orthotics, ordered and fitted Abigail’s scoliosis brace. “He played his role perfectly, giving Abigail a sense of comfort throughout the […]
Slopes and Waves: Natalie’s Journey to Overcoming Scoliosis
Natalie had always been an active teenager with a love for surfing, skiing, and running. She would often spend her weekends hitting the slopes or catching waves at the beach with her friends. Determined, Natalie worked hard to become the best athlete she could to achieve her goals. However, during a routine check-up at her pediatrician’s office, Natalie received some unexpected news. She had adolescent idiopathic scoliosis, a condition that causes the spine to curve. Her pediatrician referred her to Nemours Children’s Hospital, Delaware to meet with Dr. Suken Shah, a pediatric orthopedic surgeon. Despite the busy nature of the hospital, Natalie was treated with kindness, patience, and respect. Dr. Shah took the time to talk with her and understand her as a person, not just a patient with a medical condition. He mapped out a care plan for her scoliosis to get her back to her active lifestyle. At […]
Riley’s Scoliosis Journey
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 […]
Scoliosis Awareness Month: Riley’s Story
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 […]
The Bounce Back – Maggie’s Scoliosis (In Her Own Words)
Follow Maggie’s incredible journey of strength and resilience as she overcomes scoliosis, from diagnosis and treatment to recovery and personal growth.
Scoliosis Awareness Month: Smith’s Story
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. […]
Scoliosis Awareness Month: Willie’s Story
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 […]
From Dr. Shrader to Dr. Straighter
From using a walker to taking unassisted steps, Mari has come a long way on her journey with cerebral palsy, proving that having a condition does not define who she is or what she can accomplish.
Rally for Reed – Reed’s Story
Discover Reed’s journey with Morquio syndrome, a rare genetic disorder that affects bone growth and calcification.
Living With Morquio A – Zane’s Story
At 7 months old, Zane Brooks was diagnosed with Morquio A, a genetic condition that causes an enzyme deficiency with bone, heart, vision, and hearing problems. After his older brother (age 2.5 at the time) was diagnosed with Morquio A, Zane underwent genetic testing where he found out he did as well. “As soon as we heard that Morquio may be the diagnosis, we researched online and quickly came to the conclusion that Nemours was the best place for treatment,” said Zane’s mother Kimberlee. “Between blood work and official diagnosis, we watched many medical presentations on YouTube from Dr. Mary Theroux and Dr. Will Mackenzie and knew Nemours was the safest place for our boys.” The day of Zane’s diagnosis, the Brooks reached out to Dr. Theroux and Colleen Ditro. “Within 24 hours we had kind, knowledgeable emails in response,” said Kimberlee. “I remember talking with Colleen days after diagnosis as she walked […]
Music to My Ears: Atharv’s OI Journey
Atharv was diagnosed with osteogenesis imperfecta (OI), whose journey of resilience and determination has been made possible with the help of multidisciplinary care team at Nemours Children’s Hospital.
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