Grayson’s leukemia diagnosis at age 2 brought immense challenges, but with the support of Nemours Children’s Hospital, his family remains hopeful and resilient.
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Patient Stories
Back in the Game: Zander’s Story
Zander, an aspiring college football player, first crossed paths with Nemours Children’s Health after suffering a game-related injury. As luck would have it, Dr. Julia Fink, Nemours’ orthopedic specialist, was the team doctor on the field. After the game, Dr. Fink brought him in for an X-ray and MRI, setting the course for his recovery. The injury turned out to be an acromioclavicular joint separation (AC joint separation), which worsened during the state football championship game. Zander’s team went on to win the game, but his shoulder pain lingered, especially with throwing, even after physical therapy. To resolve the issue, Dr. Fink performed an AC joint reconstruction. Following surgery, Zander was in a sling for six weeks and underwent three months of physical therapy. By May, he was able to start his throwing program, and by August, he was ready to kick off the football season, stronger than ever. From […]
Navigating the Road Ahead – Karina’s Fight Against Acute Myeloid Leukemia
The blog shares Karina’s journey as a 4-year-old battling acute myeloid leukemia with the support of her family and Nemours Children’s Hospital.
Urology Awareness Month: Kieva’s Story
10-year-old Kieva has faced many challenges in her young life. At the age of 3, she was diagnosed with bilateral vesicoureteral reflux (VUR), a condition that brought frequent UTIs and fevers. Kieva’s journey with VUR began after a series of high fevers and recurring UTIs left her parents, Tara and Tim, searching for answers. “The constant worry about whether a fever was another UTI and the potential damage being done to Kieva was overwhelming,” shares Tara, Kieva’s mom. “Each instance left us questioning if we had sought medical help in time and how this condition might impact her future.” Kieva’s condition led them to Nemours Children’s Hospital, Delaware, where they found the care and support they needed. Referred by Kieva’s primary care doctors at Nemours Children’s Health, Media, the family met with Dr. Figueroa, who quickly became a pillar of Kieva’s care. From the very first visit, Tara knew they […]
A Journey with Scoliosis and Chiari Malformation: Carter’s Story
When he was 9 months old, Carter’s parents began to notice something unusual about their son’s posture. His torso seemed to be veering in a different direction while standing upright. Concerned, they sought answers from Carter’s pediatrician, who referred them to pediatric orthopedic surgeon Dr. Suken Shah, Division Chief of the Nemours Spine and Scoliosis Center, and the Shands/MacEwen Endowed Chair of Orthopaedic Surgery at Nemours Children’s Hospital, Delaware. Here, Carter received a diagnosis of Early Onset Scoliosis and Chiari malformation. Scoliosis is a condition where the vertebrae in the spine form a curved line instead of being straight. Larger curves can lead to joint damage, arthritis, and pain, often requiring treatment such as back braces or surgery. Chiari malformation occurs when the cerebellum pushes downward through the foramen magnum, the opening at the base of the skull. It can cause symptoms such as headaches, balance issues, and numbness. Sometimes, […]
Childhood Cancer Awareness Month: Porter’s Story
Porter’s ongoing battle with lymphoma, supported by the dedicated team at Nemours Children’s Hospital, Florida, highlights the importance of compassionate care and family strength.
Eric’s Fight and First Pitch – Childhood Cancer Awareness Month
Eric’s brave battle with cancer led him to an unforgettable moment at the Phillies Childhood Cancer Awareness Night
A New Little Man: Joshua’s Story
Joshua, now 6 years old, was diagnosed with SMA Type 1 while still in utero. This condition, characterized by muscle weakness and atrophy, led to neuromuscular scoliosis, which was first observed when he was about 11 months old. He currently receives treatment from Nemours Children’s Hospital, Florida. For the first few years of his life, Joshua’s condition was a constant battle. “Joshua wore a back brace for at least 4.5 years, 24/7, with breaks only for bathing,” recalls his grandmother, Claudia. The brace was necessary to manage his scoliosis, but it made sitting up uncomfortable and exacerbated respiratory issues common in children with SMA. “Every cold or flu he caught turned into a hospital stay and intubation on several occasions,” shares Claudia. “SMA can cause respiratory distress, but the fact that Joshua’s lungs were restricted from growth because of scoliosis made it so much worse.” A pivotal moment in Joshua’s […]
Reagan’s Epilepsy and CP Journey
Reagan’s journey with epilepsy and cerebral palsy has been strengthened by the care she received from Nemours Children’s and her advocacy efforts.
Savannah’s Cochlear Implant Journey
Born in November 2013, Savannah passed her initial hearing screening at birth, leaving her parents unaware of any hearing issues. It wasn’t until a playful moment during a game of telephone at age 6 that they discovered Savannah’s hearing impairment. Her father, Gabe, recalls the moment: “I whispered something into her left ear, and she said, ‘Oh no, Daddy, you have to whisper in my other ear. That ear doesn’t work.’” This revelation was the start of Savannah’s hearing journey. This casual game confirmed their initial suspicions. Gabe shares, “When she told us she couldn’t hear out of that ear, it made sense. She was always a loud talker, and her speech curled towards the ear that worked.” The family sought help from hearing specialists, but the initial results were disheartening. “We tried a hearing aid, but it only boosted her hearing from 4% to 12%. It just wasn’t enough,” […]
Happily, Boldly, Confidently: Kagan’s Story
At the age of 17, Kagan’s life took an unexpected turn when the symptoms of Ulcerative Colitis manifested, leading her to the care of Nemours Children’s Health. Kagan’s diagnosis unfolded in early October 2021, just two months into her senior year of high school. Suffering from months of severe abdominal pain, bloody stools, rapid weight loss, vomiting, and more, Kagan’s health was severely affected. She was scheduled for a colonoscopy to address her symptoms, but upon having labs done in the preparation room, it was discovered that she was too iron deficient anemic to have the procedure. Kagan was then hospitalized at Wolfson Children’s Hospital. There, her care team from Nemours Children’s Health, Jacksonville diagnosed her with Ulcerative Pancolitis and she was scheduled to receive blood transfusions, later have a colonoscopy, and develop a treatment plan once. Overall, this resulted in a 9-day hospital stay. Before making that long trip […]
Jacksonville DiaBesties Camp: Evie’s Journey
Thanks entirely to the generous support of our donors, Nemours Children’s Health, Jacksonville, in collaboration with Wolfson Children’s Hospital, hosts the Jacksonville DiaBesties Camp. This free five-day camp — the only one of its kind in our community — provides kids with diabetes from Northeast Florida and Southeast Georgia the opportunity to enjoy a traditional camp experience in a medically-safe environment. Our team of physicians, nurses, diabetes educators, social worker, psychologists, and volunteers donate their time to ensure this camp is accessible to all families, regardless of their resources. The benefits of camp are extensive and transformative. Children can spend time with others who understand their journey, fostering long-lasting relationships. They receive psychosocial support, increase their ability to manage their diabetes care independently, and more. Jacksonville DiaBesties Camp is not just a camp — it’s a community that allows children with diabetes to understand their disease better and learn how […]
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