Guest Contributor, Author at Nemours Blog

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Uniquely His Own: Bodhi’s Story

From the moment he was born, Bodhi’s life has been full of determination and discovery. Shortly after his birth, he didn’t pass his newborn hearing screening. At just one month old, Bodhi was diagnosed as profoundly deaf in both ears. What came next was a journey of learning, adjusting, and celebrating milestones big and small. In the words of his mom, Tabitha, discover Bodhi’s story: Bodhi is a twin, and prior to receiving treatment at Nemours Children’s Ear, Hearing and Communication Center for cochlear implants and speech therapy, he felt out of the loop – different, and somewhat isolated in his own silent world. Since being referred to Nemours Children’s by our primary care physician, Bodhi can now hear and articulate his needs and desires. His life has completely opened up! He loves music and loves to dance to his favorite songs. He gets to talk to his brother, his […]

Kady’s Scoliosis Journey (In Her Own Words)

When I was 6 years old, my mom noticed that my collar bone was higher on one side than the other. Since both my aunt and my grandfather have scoliosis, my mom was familiar with what it looked like. She had contacted a neighbor who was a doctor, and he came to our house to do a regular check to see if I had scoliosis. He said I didn’t have it, but my mom had a gut feeling that something was up, and she took me to Nemours Children’s Hospital, Florida. My mom and dad found Nemours Children’s when we moved to Lake Nona in 2014. Nemours became our primary care provider, and my siblings and I would see our pediatrician at Nemours. When my mom thought that I might have had scoliosis, things became a bit more serious. My father is a personal injury and medical malpractice attorney. Because […]

Scoliosis Awareness Month: Sadie’s Story

During the first few weeks of her life, Sadie’s parents noticed that she wasn’t meeting growth milestones. After several visits with her pediatrician and other specialists, she was ultimately admitted to a local children’s hospital where she underwent multiple tests to determine the cause. “They found an ovarian torsion that had caused a large mass in her abdomen that was removed during emergency overnight surgery,” shares Sadie’s mother, Ashley. “We hoped that surgery would be the end of the road for her medical complexities, but it turned out to be only the beginning. While she was still in the hospital, she was also diagnosed with torticollis, and upon further orthopedics follow-ups, it was realized that she had both hip dysplasia and scoliosis. Due to the number of diagnoses she had already accumulated within her first six months of life, she was referred for further genetic testing. A whole exome sequencing […]

Teamwork and Expertise: Karinda’s Story

Diagnosed with microtia at birth, Karinda’s hearing was immediately tested. The results confirmed that she had hearing loss due to bilateral microtia and atresia. Microtia is a congenital condition where the outer part of the ear (the pinna) is smaller than normal and may have an unusual shape. In bilateral cases, both ears are affected. After spending 8 days in the NICU, Karinda was transferred to Nemours Children’s Hospital, Delaware where her family first met the team that would guide them through a long-term care journey. From the start, it has been a collaborative effort among expert Nemours Children’s specialists to provide Karinda with the best possible care. Now 8 years old, the most recent step in Karinda’s treatment has been ear reconstruction surgery. This procedure has brought together Nemours physicians from across the country including Dr. Angelo Leto Barone from Orlando and Dr. Mario Aycart from Delaware. Karinda has […]

Scoliosis Awareness Month: Island’s Story

Born with esophageal atresia type A and a history of chronic pneumonia, Island’s health journey has been far from straightforward. At the age of 9, the diagnosis of thoracogenic scoliosis added another layer of complexity, impeding even the simplest of tasks. He struggled to tie his shoes and often experienced intense back pain while doing everyday things. Sitting in class, walking, and even trying to sleep at night proved difficult. At Nemours Children’s Health, Jacksonville, Island was surrounded by specialists who treated him with care, skill, and a dedication that went beyond the clinical. His journey began with a comprehensive evaluation by Dr. Kevin Neal, an expert orthopedic surgeon, who diagnosed the severity of his scoliosis and recommended spinal fusion surgery. This procedure, which involves fusing vertebrae together to straighten the spine, was a critical step in managing his condition and improving Island’s quality of life. The care Island received […]

Scoliosis Awareness Month: Carine’s Story

Carine’s story sheds light on the challenges of living with scoliosis and offers hope and inspiration to others facing this diagnosis. Through her advocacy and personal experiences, Carine aims to raise awareness and provide a voice for those navigating scoliosis treatment. During a routine check-up at 12 years old, her pediatrician, Dr. Odett Brown at Nemours Children’s Health, The Villages, Florida, noticed a slight curve in her spine, a subtle but significant detail that hadn’t been caught before. “I was doing the bend over test and she saw mild scoliosis in my back,” shares Carine. “I didn’t worry about it for a while until she saw it again a few months later and referred me over to Dr. John Lovejoy.” This referral was the first step in a journey that would impact Carine’s life. Dr. Lovejoy at Nemours Children’s Hospital, Florida conducted a thorough examination and confirmed the diagnosis of […]

Celebrating Advocacy: Sickle Cell Stories of Strength at Family Advocacy Day 2025

Nemours Children’s Health patients Naheim Smith and Reign Jefferson were both diagnosed with sickle cell disease at a young age. Thanks to treatment at Nemours, Naheim has been cured of sickle cell disease, and Reign is now better able to manage the disease and is thriving.   On June 11 and 12, Naheim and Reign joined the National Office’s Federal Affairs team on Capitol Hill, along with Dr. Stephanie Guarino, a hematologist/oncologist at Nemours Children’s Hospital, Delaware, as a part of the Children’s Hospital Association’s annual Family Advocacy Day.    Naheim’s and Nevaeh’s Story   Naheim was diagnosed with sickle cell disease when he was under a year old. During his early childhood, he experienced pain crises and strokes, which led to many hospital visits at Nemours Children’s Hospital, Delaware. After one stroke, his doctors discovered he had Moyamoya disease – a rare disorder caused by blocked arteries at the base of the […]

Care You Can Trust: Joey’s Story

An exciting birthday party took an unexpected turn when a playful game of tag ended in a traumatic injury. During the celebration, 6-year-old Joey was bitten on the face by a dog, an incident that quickly changed the tone of the day. Thankfully, his parents didn’t have to think twice about where to turn. As longtime patients of Nemours Children’s, they took their son to the place they’ve trusted for years. “We instantly knew we were in the best of hands considering the situation we were facing,” shares Joey’s mom, Shae. “Joey was in incredible pain, and his right lip was in a horrible condition. We were unsure of the severity of his situation, but we knew Nemours would be able to help him and provide him with trusted care. This was proven true upon our arrival.” “The care offered to Joey and the whole family was immediate and genuine,” […]

From Patient to Purpose: Isabella’s Story

At just 2 years old, Isabella was diagnosed with necrotizing fasciitis, a rare and life-threatening condition that began in her back and later spread to her right leg. The aggressive nature of the disease required intensive medical intervention. Physicians at multiple hospitals had to perform surgeries to remove infected muscle and tissue, a process that was both physically and emotionally taxing for Isabella and her family. Following the surgeries, Isabella was placed in a medically induced coma for two months to give her body the best chance to heal and fight off the infection. When she finally emerged from the coma, the next phase of her journey began. She was transferred to a third hospital, where she underwent physical rehabilitation and skin grafting to repair the extensive damage to her back and leg. Despite the challenges, Isabella’s resilience and determination shone through, and she made significant progress in her recovery. […]

Healthy Spring and Summer Eating: Registered Dietitians’ Top Tips

Spring and summer have always been favorite times of the year for many families. Temperatures start to warm up, and many people pack away their winter jackets for the season. The sun stays out later each day, giving everyone more time in the evenings to enjoy walks outside; and the fresh fruits and vegetables become more abundant than ever. During the spring and summer, trips to the farmers market are a favorite hobby for many families. Nothing beats the taste of locally grown produce, freshly picked and sold right from the growers. We asked a few registered dietitians here at Nemours Children’s Health to share tips they give with families looking to eat healthy during the warmer months. Here’s what they said. Snack Hacks Homemade Fruit Pops “Try homemade frozen fruit pops for a yummy, healthy and refreshing treat. Just mix together yogurt, berries and milk; pour into a popsicle […]

Headache Awareness Week – Ella’s Story

At 15, Ella Wright had been battling painful headaches for years when she was eventually diagnosed with accommodative infacility. She went through months of eye therapy, and while her eyes began focusing correctly, the headaches still didn’t go away. That’s when her family returned to the doctor this time, they were referred to Nemours Children’s Health in Jacksonville, Florida. Before Nemours, Ella struggled with frequent, debilitating headaches. Her family described her as “relying on over-the-counter medication more than five days a week just to get through the day. After school, she’d go straight to bed, needing a dark, quiet room to cope with the pain.” The constant discomfort affected her mood, her energy, and her ability to enjoy daily life. We live in Georgia and weren’t familiar with Nemours,” her family said. “But everyone there has been wonderful. Dr. Janet Leon, Nemours pediatric neurologist, is outstanding—she’s a great listener, very […]

Navigating Nail Patella Syndrome: Haven’s Story

When Haven was born, her family quickly learned she was diagnosed with a rare genetic condition called nail patella syndrome, also known as Fong’s disease. She’s one of only about 50,000 people who have it. The condition, which can affect the development of bones, joints, and nails, made everyday life a challenge. Thanks to the expertise of Nemours Children’s Health, Jacksonville, and the specialized care of Dr. David Mandel, Haven’s journey has been one of resilience and progress. Haven’s family didn’t have to look far for exceptional care. Living nearby, they turned to the Nemours Children’s orthopedics team. Here, they not only found medical expertise, but a compassionate support system. “They have always been wonderful and have helped Haven throughout her whole journey,” says her mother, Kyla. Dr. Mandel, a leading expert in pediatric orthopedics, is skilled in complex procedures like Haven’s. She underwent two 4 in 1 quadricepsplasties, a […]

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