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From Diagnosis to Triumph: Ny’Jour’s Journey

From diagnosis to triumph, Ny’Jour’s complex medical journey involving heterotaxy and heart complexities received compassionate care from Nemours Cardiac and Maternal-Fetal Medicine teams.

AMC Awareness Day: Sara & Ewa

On this Arthrogryposis Multiplex Congenita (AMC) Awareness Day, we shine a spotlight on two remarkable women, Ewa and Sara, whose journeys with AMC have inspired countless individuals. Ewa’s journey with Nemours Children’s Health began in 1986 when she traveled from Poland to receive treatment for AMC, a rare condition affecting 1 in 3,000 births. Nemours became her second home, offering life-saving care and support from a dedicated team of doctors and therapists. “Nemours, along with my family, truly shaped me into the person I am today,” Ewa shares. Her gratitude for the care she received has fueled her commitment to give back through various fundraising initiatives, including Nemours Radiothon, Brace for the Race, and an annual toy drive. In her latest endeavor, Ewa organized a book fundraiser for another Arthrogryposis patient and author, Sara Gaver. For every book donated, Ewa matched the donation, resulting in a collection of 110 copies […]

Scoliosis Awareness Month: Esther’s Story

Esther’s journey with scoliosis began during a routine check-up in the summer of 2020. Her primary care physician discovered the curvature of her spine during a yearly visit, just as Esther was experiencing a growth spurt. Her provider quickly referred Esther to a specialist at Nemours Children’s Health, Jacksonville, where an X-ray confirmed the diagnosis. “I went to get X-rays and found out my spine was crooked,” Esther shares. “It was unexpected, but I’m grateful we caught it when we did.” Under the care of orthopedic surgeon Dr. Kevin Neal, Esther embarked on an 18 month journey, closely monitoring the progression of her curve, and exploring treatment options. In the beginning, Esther didn’t experience much pain. However, as the curvature of her spine progressed, approaching 60 degrees, the impact on her daily life became increasingly challenging. “Pain didn’t come until the curve progressed horribly over two years or so, and […]

Scoliosis Awareness Month: Kalani’s Story

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 […]

Work Hard, Rest Hard, Play Hard: Sparsh’s Story

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 […]

Associate Highlight: Suken A. Shah, MD

At Nemours Children’s Hospital, Delaware, Dr. Suken A. Shah, The Shands/MacEwen Endowed Chair of Orthopedics and Chair of the Department of Orthopedic Surgery, leads with expertise and unwavering dedication to improve the lives of patients. His professional journey is rooted in a commitment to medicine and determination to solve complex cases. Reflecting on his early career decisions, Dr. Shah notes, “I was drawn to surgery early on, particularly during my medical school years.” Exposure to orthopedic surgery and guidance from esteemed mentors set him on the path to becoming a pediatric orthopedic surgeon. Dr. Shah’s decision to specialize in orthopedics stemmed from a desire to restore function and mobility, particularly in pediatric patients, setting the stage for his impactful career. Critical thinking and collaboration are essential components of patient care for Dr. Shah. “The most rewarding aspects of our work are when we can help a child with a complex […]

A Dream Recovery: Avyn’s Story

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. […]

RCDP Awareness Day: Elias’s Story

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 […]

Associate Highlight: Megan Nelson, M.A., CCC-SLP, LSLS Cert. AVT

Meet Megan Nelson, a passionate Speech Language Pathologist at Nemours Children’s Hospital, Florida. Megan’s journey into her career began with a personal connection close to her heart – her cousin Katie, born with CHARGE syndrome and hearing loss. Inspired by the transformative care Katie received, Megan felt compelled to follow a similar path, ultimately becoming a Listening and Spoken Language Specialist, Certified Auditory Verbal Therapist. “I knew I was destined to help other children and their families,” Megan reflects on her decision to pursue this career. “In watching Katie learn to listen and speak, the impact that Katie’s Auditory Verbal Therapist made on her and my family was especially meaningful.” “When I saw the posting for a Speech Language Pathologist for the Nemours Children’s Cochlear Implant team, I knew it was the best fit and applied immediately,” Megan shares. Since then, she has thrived in her role as Lead Auditory […]

Page 4 of 18

Page 4 of 18

Page 4 of 18