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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 […]

Navigating Youth Mental Health

Dr. Monica Barreto highlights the importance of the mind-body connection and the vital role of parents in supporting youth mental health.

Navegando la Salud Mental de los Jovenes

La Dra. Monica Barreto destaca la importancia de la conexión mente-cuerpo y el papel vital de los padres en el apoyo a la salud mental de sus hijos.

Living Life to the Fullest: Carly’s Journey with Morquio Type A

For Carly, the journey to a Morquio Type A diagnosis began with uncertainty. As a young child, there were signs that something wasn’t quite right, and her parents embarked on a quest for answers. After a lot of testing and a few misdiagnoses, it wasn’t until Carly was around a year and a half old that a local doctor stumbled upon a small paragraph in a textbook about Morquio Type A, setting the stage for a lifelong medical journey. When her physician, Dr. Kopis from St. Jose Hospital, could no longer practice, Carly’s journey led her to the care of Dr. William Mackenzie at Nemours Children’s Hospital, Delaware. With expertise in skeletal dysplasia, Nemours Children’s was the perfect fit for Carly, offering specialized care tailored to her needs. “From the beginning, my parents loved the care I received at Nemours,” says Carly. “My mom immediately transitioned all of my doctors to […]

Page 5 of 18

Page 5 of 18

Page 5 of 18