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Patient Stories

Under the expert care of our dedicated team in Nemours Children’s Hospital, Florida, Kalani embarked on a path of treatment for juvenile idiopathic scoliosis and neurofibromatosis type 1 (NF1) at 6 years old. Her journey began in July 2023 when her mother, Monica, noticed a slight curvature in Kalani’s back. Concerned, they sought answers from orthopedic surgeon Dr. John Lovejoy at Nemours Children’s. “An X-ray confirmed that her back had a curvature and an MRI was ordered out of caution to make sure there was not an underlying issue causing the curve,” shares Monica. “The MRI showed she had lesions/tumors believed to be caused by NF1. Following the MRI results, Dr. Lovejoy referred Kalani to oncology and genetics to confirm the diagnosis and begin treatment. When we had a follow-up with Dr. Lovejoy at the end of October 2023, an X-ray showed the curve in Kalani’s spine had gotten worse […]

At just 21 years old, Sparsh has already achieved what many only dream of, inspiring and touching the hearts of millions across the globe. Born with Osteogenesis Imperfecta, a condition making his bones extremely fragile, Sparsh faces unique obstacles in his daily life. Unable to bear weight on his hands and legs, he navigates the world differently than other kids. It was Sparsh’s diagnosis of severe scoliosis at the age of 14 that led him to Nemours Children’s Health. During a routine checkup and X-Rays with his local orthopedic doctor, Dr. Thomas McPartland, the scoliosis was discovered. Conversations about spinal fusion surgery immediately began. “My scoliosis required me to rest often in my wheelchair or on my bed to relieve back pressure,” says Sparsh. “It severely affected my posture, which indirectly hampered the function of vital organs such as my lungs, which are important to my singing career!” Sparsh is […]

For Cameron Thackston, 17, what started as a pain in his foot in early 2023, turned out to be something much more serious. He and his mom, Alma, thought it could’ve been tendonitis, only his condition wasn’t improving. The sharp pains continued to the point where the family was forced to take a trip to the emergency room. After a few rounds of testing Cameron received the news. He was diagnosed with cancer. Mom was devastated. “I went into a panic,” she said. And Cameron?  How did he take the news? He had one simple question for the care team. “Is it curable?” he asked. “Yes,” they said. “Cool,” he replied. With his primary diagnosis being T-Cell Acute Lymphoblastic Leukemia, his mom admits she was scared. But the family only had one choice. Fight. After rounds of infusions and oral chemotherapy and hours spent on the Hematology-Oncology Floor at Nemours […]

At just four years old, Avyn was diagnosed with a severe 60º curvature of Early Onset Scoliosis. Her local physicians recommended Mehta casting, prompting her family to begin searching for the best pediatric orthopedic specialists in the nation. Their search led them to Dr. Joseph Khoury in Florida and Dr. Alec Stall in Texas. The decision to choose between these two esteemed doctors wasn’t easy, but ultimately, Avyn’s family placed their trust in Dr. Khoury at Nemours Children’s Hospital, Florida. “Avyn has been extremely resilient throughout her scoliosis journey,” says her mother, Sarah. Thanks to her treatments, Avyn’s curve progression slowed, allowing her to maintain her normal life, participating in athletics and daily activities with minimal discomfort. However, as she grew older, her family knew she would need a spinal fusion surgery at age 10. “We discovered Nemours when Dr. Khoury transferred from Shriners Tampa to Nemours Children’s,” says Sarah. […]

Kevin’s healthcare journey began at just three months old when he was diagnosed with Neuronal Migration, Microcephaly, and Differentiation Muscular Hypertonicity. This diagnosis marked the beginning of a new chapter for Kevin and his family, as they worked through the complexities of his condition. Prior to finding care at Nemours, Kevin’s diagnosis affected every aspect of daily life. His mother describes a relentless cycle of hospital visits and treatments. “He missed lots of school, and family trips,” says Kevin’s mom. “We would wake up 7-10 times a night, he would never sleep because of pain and so much more.” However, hope and new experiences emerged when Kevin’s family discovered Nemours in November of 2023. After months of research, they made the life-changing decision to seek care at Nemours, leaving behind their home in Michigan in pursuit of care for Kevin. From the moment they stepped through the doors of Nemours, […]

Brittany and John found themselves navigating uncharted waters when their son, Elias, was diagnosed with rhizomelic chondrodysplasia punctata (RCDP) type 1. RCDP is a rare skeletal dysplasia that affects the body’s ability to produce plasmalogens which are essential for cell structure and nervous system function. Their journey began with the unexpected—low amniotic fluid during Brittany’s induction with Elias at 37 weeks. What followed were suspicions of cerebral palsy, only to discover skeletal differences and cataracts as well. It wasn’t until Elias was ten months old that the diagnosis of RCDP was confirmed. Before Nemours Children’s Health, life for Brittany and John was a whirlwind of uncertainties and challenges. “Our main struggle before diagnosis & coming Nemours was feeding issues,” share Brittany and John. “First, we didn’t realize Elias had a rare form of dwarfism, so we weren’t sure why he wasn’t gaining weight. Second, he developed a bottle aversion at […]