Follow Maggie’s incredible journey of strength and resilience as she overcomes scoliosis, from diagnosis and treatment to recovery and personal growth.
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 […]
At the young age of 15, Kalianne never expected to receive the challenging diagnosis of multiple sclerosis. Overnight, her world changed. When Kalianne woke up sweating with chills and couldn’t feel the right side of her face or body, her dad immediately took her to the local ER. Kalianne was so nervous to be heading to the hospital, she got sick in the car on the way there. Once they arrived, Kalianne was whisked away for blood tests and a CT scan. After looking at her test results, the ER staff concluded that Kalianne was having severe headaches, which was causing the vomiting and other symptoms and then they sent her home. A few days had gone by, and Kalianne’s symptoms continued to worsen. She was experiencing numbness in her face and tongue, her limbs felt heavy, and she was losing the ability to write clearly. After researching her symptoms […]
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.
Two days after his birth, Gray started having gastrointestinal complications. It was found that his lower intestine was in a knot and his meconium was so compacted, the surgeons’ tool couldn’t clear it out. Gray was immediately admitted to the NICU and taken in for emergency surgery, before his mother was even discharged from the hospital. Six days after he was born, “We ended up getting a call from Nemours Pulmonology confirming Gray’s diagnoses of Cystic Fibrosis. They told us that he has ‘double delta f508’ and that he has one of the most common genetic mutations for CF,” says Gray’s mother, Lauren. “The phone call was brief, and everything was a blur. We were told that his mutation qualified for really good treatments and that he would have a good prognosis!” “Gray was born with a common condition in children with cystic fibrosis called meconium ileus in which a […]
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 […]
Discover Reed’s journey with Morquio syndrome, a rare genetic disorder that affects bone growth and calcification.
“Once I started nursing school, I knew I had found my life’s work,” says Senior Clinical Research Nurse Coordinator Becca Davis. Even from a young age, Becca felt drawn to the nursing field. “My earliest memories are of when I was 4 or 5. My mom suffered from chronic migraines. I would bring her water, crackers, and cold wash cloths to make sure she was comfortable,” says Becca. Shortly after completing nursing school, Becca began her career at Nemours Children’s Health in Pensacola. She had visited Nemours as a student and knew it was on the top of her list of future employment goals. “I love our mission to make sure that no child goes without being taken care of,” says Becca. “The culture of compassion we have drives me to show up every day and give my best efforts for the children in our region.” While she moved to […]
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.
We are thrilled to share the incredible story of twin sisters Tatiana and Talia who both pursued careers in nursing and now work together in the PICU at Nemours Children’s Hospital, Florida! These remarkable women have dedicated their lives to caring for critically ill children, and their unique bond as twins adds an extra layer of compassion and understanding to their work. The pair began working at Nemours after Tatiana moved back to the Central Florida area. She joined Nemours and wanted to get her sister, Talia, back into bedside nursing (which Talia thought she was done with)! “Luckily,” says Tatiana, “Talia applied and got hired, and we both started orientation and training together and working together in the same unit.” The twins love working together and for Nemours. “It’s great that Nemours is close to home and I have my sister who understands when I’ve had a rough, emotional […]
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