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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 journey with epilepsy and cerebral palsy has been strengthened by the care she received from Nemours Children’s and her advocacy efforts.

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,” […]

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 […]

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 […]

Micah’s journey began with some unexpected twists and turns, before he even entered this world. “Before Micah was born, we received the news that he might have Down syndrome through routine blood work during pregnancy,” shares his mother, Kaitlyn. “It was a whirlwind of emotions, but we leaned on the support and expertise of Nemours from the very beginning.” Kaitlyn’s family have been seeing providers at Nemours Children’s throughout the Delaware Valley ever since her firstborn arrived prematurely. Her GYN office recommended Nemours Children’s, and they found the care to be exceptional, so they continued with Micah’s treatment there. It was his team at Nemours that diagnosed Micah with Trisomy 21, commonly known as Down syndrome, along with clubfoot and a cardiac concern – coarctation of the aorta. Nemours became their beacon of hope, with a multidisciplinary team ready to address Micah’s complex needs. From the Trisomy 21 Clinic to […]