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Nemours Children’s Health, Florida

CMV Awareness Month: Nicolas’s Story

At a New Year’s Eve party, Nicolas’s parents noticed something was off when he didn’t react to the loud fireworks. This moment was a turning point, leading to a diagnosis that would change their lives. This incident prompted Nicolas’s family to seek further medical attention for their son. As they delved deeper into Nicolas’s symptoms, it became clear that something more significant was at play. The diagnosis, which came when Nicolas was just two years old, revealed a complex set of challenges: deafness in both ears, Cytomegalovirus (CMV), autism, mixed receptive-expressive language disorder, and global developmental delay. Each of these conditions brought its own set of hurdles, but the impact on communication was particularly clear. The symptoms of congenital Cytomegalovirus (CMV) infection can vary. Most babies infected before birth show no symptoms after delivery, but they are at risk for hearing, vision, neurological, and developmental problems. Even babies without clear […]

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 […]

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 […]

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 […]

Care Worth Following: Rylee’s Story

Born with Congenital Diaphragmatic Hernia (CDH) – a diaphragm condition that has led to asthma, gastroparesis, and scoliosis – 14-year-old Rylee has been in her fair share of doctor’s appointments. Through family moves and changing health systems, one thing has remained constant throughout Rylee’s care: Dr. Joseph Khoury. “We first met Dr. Khoury in Birmingham, AL,” shares Rylee’s mom, Allison. “We’ve followed him to different hospital locations for treatments with scoliosis from her birth defect. Her treatments started when she was 6 months old with Mehta castings for a year and a half and then began providence brace(s) until her bone age stopped growing.” Rylee and her family discovered Nemours Children’s Health, Lakeland when Dr. Khoury began working at the practice. “We followed our wonderful orthopedic specialist to Nemours,” says Allison. At Nemours Children’s, they’ve connected with an expert team of specialists that have become like family. “We have thoroughly […]

Finding His Voice: Noah’s Story

For years, Tiffany knew something wasn’t quite right with her son Noah’s voice. From birth, his cry was softer than expected and his voice high-pitched. He struggled with reflux, swallowing difficulties, and vocal strain. “I had been asking doctors about Noah’s voice since birth,” shared Tiffany. “But every year, they dismissed it as reflux.” Finally, when Noah was 9, a referral for voice therapy led him to Nemours Children’s Health, Winter Garden. Here, he met speech-language pathologist, Katie Slone, CCC-SLP. Mrs. Slone dug deeper, requesting further tests to get to the root of the issue. The answer? Noah had a congenital laryngeal web, a condition where tissue partially blocks the airway, affecting the sound of his voice. With a diagnosis in hand, Noah began voice therapy at Nemours Children’s. Under Mrs. Slone’s guidance, he worked on techniques to improve his voice while his family weighted long-term treatment options. “Mrs. Slone […]

A Path to Better Hearing: Yara’s Story

When Yara was born, her family received news that they hadn’t anticipated – she didn’t pass her newborn hearing screening. While she was a happy baby who responded to sounds and hit developmental milestones, follow-up tests eventually confirmed that she had mild hearing loss. “At first, I had so many questions and concerns about her future – how this might affect her education, her ability to grow into adulthood with this diagnosis,” Yara’s mother, Ashley shares. “But as a family, we knew we would navigate this challenge together.” After receiving a referral from their pediatrician, Yara’s family turned to Nemours Children’s Hospital, Florida for answers. It was when they met Dr. Morgan Wilcox, pediatric audiologist, that they finally felt they fully understood Yara’s diagnosis. “We immediately felt at ease with Dr. Wilcox and her comforting and reassuring approach,” says Ashley. “She explained everything clearly, answered all our questions, and helped […]

Limb Differences Awareness Month: Taylor’s Story

For 10-year-old Taylor, every step of her journey has been guided by determination, expert care, and a team that feels more like family. Diagnosed at birth with fibular hemimelia, proximal femoral focal deficiency (PFFD), clubfoot, and leg length discrepancy, she has faced challenges with mobility from an early age. But with the right medical team by her side, Taylor is making incredible strides toward walking on two evenly balanced feet. Taylor’s family had long placed their trust in Dr. Shawn Standard, a highly respected specialist in limb lengthening and reconstruction. So when Dr. Standard moved his practice to Nemours Children’s Hospital, Florida, in fall 2024, Taylor’s family didn’t hesitate to follow. Under the care of Dr. Standard, Taylor has undergone a series of treatments designed to improve her mobility and function, including super ankle surgery, external and internal fixators for limb lengthening, ankle fusion, and the placement of 8 plates. […]

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