Orthopedics Archives - Nemours Blog

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Orthopedics

Care You Can Trust: Emerson & Lilly’s Story

For Latisha, osteogenesis imperfecta (OI) has always been a part of life. Diagnosed around age 6 after multiple leg fractures, she knew the challenges that came with the condition. When she became a mother, she was determined to find the best possible care for her children. That search let her to Nemours Children’s Hospital, Delaware – the same place she had come to trust for her own care. Her children, Emerson and Lilly, were both diagnosed with Type 1 OI at birth. “Without the care from Dr. Franzone and the entire OI team, I’m not sure where my kids would be,” Latisha shared. OI, commonly known as brittle bone disease, is a genetic disorder that prevents the body from building strong bones. For Emerson, those fractures started early – he broke his leg three times in just one year after learning to walk. Lilly also faced fractures within months of […]

Kady’s Scoliosis Journey (In Her Own Words)

When I was 6 years old, my mom noticed that my collar bone was higher on one side than the other. Since both my aunt and my grandfather have scoliosis, my mom was familiar with what it looked like. She had contacted a neighbor who was a doctor, and he came to our house to do a regular check to see if I had scoliosis. He said I didn’t have it, but my mom had a gut feeling that something was up, and she took me to Nemours Children’s Hospital, Florida. My mom and dad found Nemours Children’s when we moved to Lake Nona in 2014. Nemours became our primary care provider, and my siblings and I would see our pediatrician at Nemours. When my mom thought that I might have had scoliosis, things became a bit more serious. My father is a personal injury and medical malpractice attorney. Because […]

Scoliosis Awareness Month: Sadie’s Story

During the first few weeks of her life, Sadie’s parents noticed that she wasn’t meeting growth milestones. After several visits with her pediatrician and other specialists, she was ultimately admitted to a local children’s hospital where she underwent multiple tests to determine the cause. “They found an ovarian torsion that had caused a large mass in her abdomen that was removed during emergency overnight surgery,” shares Sadie’s mother, Ashley. “We hoped that surgery would be the end of the road for her medical complexities, but it turned out to be only the beginning. While she was still in the hospital, she was also diagnosed with torticollis, and upon further orthopedics follow-ups, it was realized that she had both hip dysplasia and scoliosis. Due to the number of diagnoses she had already accumulated within her first six months of life, she was referred for further genetic testing. A whole exome sequencing […]

Scoliosis Awareness Month: Island’s Story

Born with esophageal atresia type A and a history of chronic pneumonia, Island’s health journey has been far from straightforward. At the age of 9, the diagnosis of thoracogenic scoliosis added another layer of complexity, impeding even the simplest of tasks. He struggled to tie his shoes and often experienced intense back pain while doing everyday things. Sitting in class, walking, and even trying to sleep at night proved difficult. At Nemours Children’s Health, Jacksonville, Island was surrounded by specialists who treated him with care, skill, and a dedication that went beyond the clinical. His journey began with a comprehensive evaluation by Dr. Kevin Neal, an expert orthopedic surgeon, who diagnosed the severity of his scoliosis and recommended spinal fusion surgery. This procedure, which involves fusing vertebrae together to straighten the spine, was a critical step in managing his condition and improving Island’s quality of life. The care Island received […]

Scoliosis Awareness Month: Carine’s Story

Carine’s story sheds light on the challenges of living with scoliosis and offers hope and inspiration to others facing this diagnosis. Through her advocacy and personal experiences, Carine aims to raise awareness and provide a voice for those navigating scoliosis treatment. During a routine check-up at 12 years old, her pediatrician, Dr. Odett Brown at Nemours Children’s Health, The Villages, Florida, noticed a slight curve in her spine, a subtle but significant detail that hadn’t been caught before. “I was doing the bend over test and she saw mild scoliosis in my back,” shares Carine. “I didn’t worry about it for a while until she saw it again a few months later and referred me over to Dr. John Lovejoy.” This referral was the first step in a journey that would impact Carine’s life. Dr. Lovejoy at Nemours Children’s Hospital, Florida conducted a thorough examination and confirmed the diagnosis of […]

From Patient to Purpose: Isabella’s Story

At just 2 years old, Isabella was diagnosed with necrotizing fasciitis, a rare and life-threatening condition that began in her back and later spread to her right leg. The aggressive nature of the disease required intensive medical intervention. Physicians at multiple hospitals had to perform surgeries to remove infected muscle and tissue, a process that was both physically and emotionally taxing for Isabella and her family. Following the surgeries, Isabella was placed in a medically induced coma for two months to give her body the best chance to heal and fight off the infection. When she finally emerged from the coma, the next phase of her journey began. She was transferred to a third hospital, where she underwent physical rehabilitation and skin grafting to repair the extensive damage to her back and leg. Despite the challenges, Isabella’s resilience and determination shone through, and she made significant progress in her recovery. […]

Navigating Nail Patella Syndrome: Haven’s Story

When Haven was born, her family quickly learned she was diagnosed with a rare genetic condition called nail patella syndrome, also known as Fong’s disease. She’s one of only about 50,000 people who have it. The condition, which can affect the development of bones, joints, and nails, made everyday life a challenge. Thanks to the expertise of Nemours Children’s Health, Jacksonville, and the specialized care of Dr. David Mandel, Haven’s journey has been one of resilience and progress. Haven’s family didn’t have to look far for exceptional care. Living nearby, they turned to the Nemours Children’s orthopedics team. Here, they not only found medical expertise, but a compassionate support system. “They have always been wonderful and have helped Haven throughout her whole journey,” says her mother, Kyla. Dr. Mandel, a leading expert in pediatric orthopedics, is skilled in complex procedures like Haven’s. She underwent two 4 in 1 quadricepsplasties, a […]

Care Worth Following: Rylee’s Story

Born with Congenital Diaphragmatic Hernia (CDH) – a diaphragm condition that has led to asthma, gastroparesis, and scoliosis – 14-year-old Rylee has been in her fair share of doctor’s appointments. Through family moves and changing health systems, one thing has remained constant throughout Rylee’s care: Dr. Joseph Khoury. “We first met Dr. Khoury in Birmingham, AL,” shares Rylee’s mom, Allison. “We’ve followed him to different hospital locations for treatments with scoliosis from her birth defect. Her treatments started when she was 6 months old with Mehta castings for a year and a half and then began providence brace(s) until her bone age stopped growing.” Rylee and her family discovered Nemours Children’s Health, Lakeland when Dr. Khoury began working at the practice. “We followed our wonderful orthopedic specialist to Nemours,” says Allison. At Nemours Children’s, they’ve connected with an expert team of specialists that have become like family. “We have thoroughly […]

RCDP Awareness Day: Maddie’s Story

The day Maddie was born, doctors performed an X-ray to investigate fluid in her lungs. During this X-ray, they discovered signs of Rhizomelic Chondrodysplasia Punctata (RCDP). This rare condition, which affects bone growth and can lead to orthopedic and developmental challenges, was confirmed a few weeks later through bloodwork. With the help of Nemours Children’s Hospital, Delaware pediatric specialists and cutting-edge research, Maddie and her family have found a community that understands and supports them. “We were introduced to Nemours Children’s in 2017 by RhizoKids International,” shares Maddie’s mom, Jenna. “Through this partnership, we connected with the Nemours team and specialists focused on RCDP. This led to our involvement in the development of the RCDP Natural History Study, an important step in preparing for clinical trials of synthetic plasmalogen.” Maddie and her family have been actively involved in the RCDP Natural History Study conducted at Nemours, attending visits every six […]

MPS Awareness Day: Eddie’s Story

Eddie has been a patient at Nemours Children’s Hospital, Delaware since he was just 2½ years old. Now 21, he’s spent nearly two decades navigating Morquio A syndrome and making trips to Delaware from Wisconsin to receive the care he needs. His journey began when his parents noticed developmental differences. “I was 2 years old, and my mom started worrying about my chest bone because it looked abnormal,” shares Eddie. For the next nine months, his family saw many different doctors to seek answers. Finally, they discovered a doctor who immediately recognized his symptoms and diagnosed Eddie with Morquio, and recommended they see Dr. William Mackenzie at Nemours Children’s. Morquio A syndrome (also known as mucopolysaccharidosis IVA or MPS IVA) is one of a group of disorders called mucopolysaccharidosis (MPS). In MPS, there’s either not enough of the enzyme that breaks down a type of sugar called glycosaminoglycans (or mucopolysaccharides) or none at all. […]

Return to the Court: Jesse’s Story

Basketball has always been a huge part of Jesse Williams’ life. As a 17-year-old athlete, he’s spent years honing his skills on the court. But when persistent knee pain escalated into something more concerning, Jesse found himself facing a challenge that would test his resilience—both physically and mentally. Jesse was first diagnosed with osteochondritis dissecans (OCD) of the knee at 15 after noticing he could feel his bone moving around. “I had knee pain in seventh grade, but a year later, during a summer in ninth grade, I noticed a piece of bone floating around in my knee that I could poke around,” Jesse shared. A visit to the doctor confirmed the diagnosis, and he was told he would need surgery to repair the damage. OCD is when a piece of bone and the attached cartilage break down and become loose. The loose piece can break away completely from the end of the bone. […]

OI Awareness Week: The Benyo Family

When Carrie Benyo’s femur broke at just eight weeks old, her family wasn’t surprised. Osteogenesis Imperfecta (OI) ran in their family, and Carrie quickly became familiar with the challenges that came with it—multiple fractures and the need for specialized care. So when her daughter, Vaeda, was born, Carrie didn’t wait for the first fracture to seek answers. Through cord blood testing at birth, Vaeda was diagnosed with OI Type 1 when the results came back just four weeks later. Determined to find the best care for her daughter, Carrie discovered Nemours Children’s Hospital, Delaware, a nationally recognized leader in OI treatment. “I wanted the best specialists I could find for her,” shares Carrie. What started as a search for Vaeda’s care soon became a turning point for Carrie, too. “When they said they could treat me too I started seeing them as well. Before that I did not have routine […]

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