POSTED BY:
Guest Contributor

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 […]

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 […]

Jonathan decided to become a nurse after his grandfather was diagnosed with bladder cancer. He was inspired by the many great nurses that cared for his grandfather at home and inpatient. Around the time he was graduating high school he was thinking about careers to pursue. Jonathan says, “I knew I liked working with people, and most of all I liked helping. Nursing fit into those categories perfectly and that’s what led me to apply to nursing school.” But Jonathan’s story here at Nemours Children’s Health is unique. Here’s his incredibly unique journey in his own words: In April of 2023, I was running in the Mimosas for Marrow 5K that is hosted by a previous oncology patient and her family. At this 5K I connected with the National Marrow Donor Program (NMDP), who added me to the national donor database. In November, I then found out that I had […]

Fellows Share Their Challenges and Triumphs  For Mycah Ayala-Brittain, volunteering in her mother’s special education classroom was her first opportunity to learn how professionals collaborate to meet the needs of children. The classroom had teachers, teaching assistants, physical therapists, occupational therapists, speech and language pathologists, and medical personnel that collaborated to provide individualized care to support children with behavioral health needs.   Throughout her education, Mycah learned about the barriers that families face accessing quality health care. These experiences led her to pursue a doctorate in psychology, expanding her knowledge and allowing her to provide culturally sensitive mental health care. At Nemours Children’s Health, Mycah has had the chance to explore multiple behavioral health settings, further growing and strengthening her skills within an integrated health care system.   When Martisha Brown was growing up in Delaware, she felt like she didn’t have the counseling support she needed. High school brought about challenges, […]

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 […]