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.
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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 […]
Associate Highlight- Jonathan Haro’s Stem Cell Donation
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 […]
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 […]
Family Advocacy: How Cancer took Cameron to Chords and Capitol Hill
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 […]
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. […]
From Michigan to Florida: Kevin’s Story
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, […]
Associate Highlight: Dr. Rossi’s Pediatric Neurology Journey
Dr. Rossi’s journey to Nemours Children’s Health highlights his dedication to pediatric neurology and collaborative care.
Associate Highlight: Dr. Evan Graber, Endocrinologist
Meet Evan Graber, Pediatric Endocrinologist and Program Director of the Pediatric Endocrine Fellowship at Nemours Children’s Hospital, Delaware. Dr. Graber completed his Pediatrics residency at Cohen Children’s Medical Center of New York and his Pediatric Endocrine Fellowship at Icahn School of Medicine at Mount Sinai. He has been working at Nemours ever since and can’t imagine a better place to work. “I knew I wanted to work with children back as a teenage camp counselor. My interest in science drove me towards medicine in college and being a pediatrician has been such a privilege and joy. I could not imagine working with any other population of patients. Endocrine spoke to me during residency. It is a field where you can follow patients and their families from birth to young adulthood. Many endocrine conditions are chronic requiring not only medical knowledge but a desire to address psychosocial issues as well. You get to form a real bond with families and forming those relationships makes Endocrine such a fun specialty […]
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