Guest Contributor, Author at Nemours Blog

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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 […]

RCDP Awareness Day: Maddie’s Story

The day Maddie was born, doctors performed an X-ray to investigate fluid in her lungs. During this X-ray, they discovered signs of Rhizomelic Chondrodysplasia Punctata (RCDP). This rare condition, which affects bone growth and can lead to orthopedic and developmental challenges, was confirmed a few weeks later through bloodwork. With the help of Nemours Children’s Hospital, Delaware pediatric specialists and cutting-edge research, Maddie and her family have found a community that understands and supports them. “We were introduced to Nemours Children’s in 2017 by RhizoKids International,” shares Maddie’s mom, Jenna. “Through this partnership, we connected with the Nemours team and specialists focused on RCDP. This led to our involvement in the development of the RCDP Natural History Study, an important step in preparing for clinical trials of synthetic plasmalogen.” Maddie and her family have been actively involved in the RCDP Natural History Study conducted at Nemours, attending visits every six […]

Rocco’s Journey with Nemours Children’s (In Mom’s Words)

We were at our favorite skate park with friends when my son, Rocco, fell off his skateboard and hurt his leg. We headed straight to the ER, where we found out that Rocco had a closed triplane fracture of his right ankle. While in the ER, they also noticed his blood pressure was high. My first thought was, ‘He just broke his ankle, of course it’s high.’ But the nurse insisted that we make a follow-up appointment with his pediatrician. After a few days of Rocco being home, we checked his blood pressure, and it was still very high. So, we made an appointment with the pediatrician. Rocco’s father was 13 years old when he went into kidney failure. Because of this family history, I asked them to do a full kidney workup on Rocco. A day later, we received a phone call asking us to go to our local […]

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 […]

Associate Highlight: Yeraldi Geronimo, CCC-SLP, BE

Yeraldi is more than just a speech-language pathologist, she’s a key part in helping children communicate with confidence. As a member of the plastic surgery department at Nemours Children’s Hospital, Florida, Yeraldi works closely with children with cleft lip and palate, craniofacial conditions, and other diagnosis that affect communication. “I have always known that I wanted to work with children,” shares Yeraldi. “My interest in the field was sparked when my mother introduced me to a friend who worked as a Speech-Language Pathologist (SLP). After observing her work one day, I was immediately captivated by the profession. What resonated most with me was witnessing the profound impact of effective communication and the ability to help children find their voice.” One of her favorite aspects of working at Nemours Children’s is the culture of teamwork. “I feel incredibly fortunate to work alongside such a talented, supportive, and intelligent group of professionals,” […]

MPS Awareness Day: Eddie’s Story

Eddie has been a patient at Nemours Children’s Hospital, Delaware since he was just 2½ years old. Now 21, he’s spent nearly two decades navigating Morquio A syndrome and making trips to Delaware from Wisconsin to receive the care he needs. His journey began when his parents noticed developmental differences. “I was 2 years old, and my mom started worrying about my chest bone because it looked abnormal,” shares Eddie. For the next nine months, his family saw many different doctors to seek answers. Finally, they discovered a doctor who immediately recognized his symptoms and diagnosed Eddie with Morquio, and recommended they see Dr. William Mackenzie at Nemours Children’s. Morquio A syndrome (also known as mucopolysaccharidosis IVA or MPS IVA) is one of a group of disorders called mucopolysaccharidosis (MPS). In MPS, there’s either not enough of the enzyme that breaks down a type of sugar called glycosaminoglycans (or mucopolysaccharides) or none at all. […]

Return to the Court: Jesse’s Story

Basketball has always been a huge part of Jesse Williams’ life. As a 17-year-old athlete, he’s spent years honing his skills on the court. But when persistent knee pain escalated into something more concerning, Jesse found himself facing a challenge that would test his resilience—both physically and mentally. Jesse was first diagnosed with osteochondritis dissecans (OCD) of the knee at 15 after noticing he could feel his bone moving around. “I had knee pain in seventh grade, but a year later, during a summer in ninth grade, I noticed a piece of bone floating around in my knee that I could poke around,” Jesse shared. A visit to the doctor confirmed the diagnosis, and he was told he would need surgery to repair the damage. OCD is when a piece of bone and the attached cartilage break down and become loose. The loose piece can break away completely from the end of the bone. […]

OI Awareness Week: The Benyo Family

When Carrie Benyo’s femur broke at just eight weeks old, her family wasn’t surprised. Osteogenesis Imperfecta (OI) ran in their family, and Carrie quickly became familiar with the challenges that came with it—multiple fractures and the need for specialized care. So when her daughter, Vaeda, was born, Carrie didn’t wait for the first fracture to seek answers. Through cord blood testing at birth, Vaeda was diagnosed with OI Type 1 when the results came back just four weeks later. Determined to find the best care for her daughter, Carrie discovered Nemours Children’s Hospital, Delaware, a nationally recognized leader in OI treatment. “I wanted the best specialists I could find for her,” shares Carrie. What started as a search for Vaeda’s care soon became a turning point for Carrie, too. “When they said they could treat me too I started seeing them as well. Before that I did not have routine […]

Making a Comeback: Cole’s Story

For 14-year-old Cole, sports have always been a huge part of life. Whether it’s football, wrestling, basketball, or lacrosse, he thrives on the competition and camaraderie of being part of a team. But with one play, Cole’s season was brought to an abrupt halt. “I was playing football, went to make a tackle, and my knee buckled,” Cole recalls. His coaches and the team mom suspected right away that it was his ACL. An MRI confirmed their fears—Cole had torn his ACL and meniscus, injuries that would require surgery and months of physical therapy. Cole’s family knew exactly where to turn. As a baby, he had spent time in the NICU at Nemours Children’s Hospital, Delaware, so when it came time to find expert care for his knee, Nemours Children’s was the clear choice. Under the care of Dr. Su and his team, Cole underwent surgery that rebuilt his ACL […]

OI Awareness Week: Koa’s Story

When Viana first walked through the doors of Nemours Children’s Hospital, Delaware, she felt something she hadn’t in days: relief. Her son, Koa, had been diagnosed with osteogenesis imperfecta (OI), a rare genetic disorder often called “brittle bone disease.” Before Koa was even born, doctors warned Viana that his chances of survival were low. “Almost every doctor I saw just gave me the same answer, that he wouldn’t live,” she shared. But Viana believed in her baby – and found a team at Nemours Children’s who believed in him, too. Now one year old, Koa is doing more than surviving, he’s thriving. Thanks to specialized OI care, bone-strengthening medications, and the compassionate support of his OI team including medical care and orthopaedic care, Koa is living a full and joyful life. Though OI can be life-threatening, new research from Nemours Children’s is shedding light on a more hopeful future for […]

Associate Highlight: Charlie Cericola, OTR

At Nemours Children’s Health, we are so proud of our occupational therapy teams, who are dedicated to helping children reach their highest level of independence and function. One of those standout professionals is Charlie Cericola, a Certified Hand Therapist and Occupational Therapist on our Outpatient Therapy Services team at Nemours Children’s Hospital, Delaware. Charlie’s path to occupational therapy at Nemours Children’s started with an interest in the human hand! “I am fascinated by the form and function of the human hand,” shares Charlie. “I’m an occupational therapist by training and I spent many years working in a teaching hospital in Bronx, NY. That position afforded me the opportunity to rotate through the various therapy settings and I soon discovered that loved working in outpatient hand therapy. At that time, I was also working through early intervention, treating children in some underserved areas in south Bronx and Queens. Becoming a hand […]

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