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18-year-old Chloe is preparing for her next chapter while continuing to manage a rare skeletal dysplasia with the support of her care team at Nemours Children’s Hospital, Delaware. Her medical journey began early, and has been shaped by expert care, community, and a team that understands her unique needs. During her mother, Cynthia’s, pregnancy, an ultrasound revealed that Chloe would be born with a form of dwarfism. These early signs prompted close monitoring and additional testing after birth. It wasn’t until she was about 1.5 years old that Chloe underwent genetic testing, confirming a spondyloepiphyseal dysplasia (SED) diagnosis. SEDs are disorders that involve both the spine and the ends of long bones. Patients with SED often experience musculoskeletal problems with the neck, spine, lower limbs, feet, and joints. As her family navigated the early stages of her diagnosis, they connected with Little People of America (LPA). While attending an LPA regional […]

Mathew’s mother, Megan, was 28 weeks pregnant when she learned her baby had Tetralogy of Fallot (TOF), a rare, congenital condition caused by a combination of four heart defects that change the way blood flows through the heart and to the lungs, resulting in less oxygen-rich blood being carried to the body. Mathew would need surgery soon after birth and Megan’s OBGYN referred her to Dr. Mehta at Nemours Children’s Health, Pensacola. “As a first-time mom, I was terrified and spent countless hours Googling all the worst-case scenarios,” recalls Megan. “But Dr. Mehta reassured me with a simple, ‘I got you.’” Sure enough, Mathew came home on Thanksgiving Day, four days after he was born. Mathew’s Surgery Three weeks later, Mathew’s oxygen saturation dropped into the 30s — he needed open-heart surgery and Megan requested a transfer to Nemours Children’s Hospital, Florida. “The patient and family care at Nemours Children’s […]

In February, our daughter Annistyn broke her humerus when she fell off a snowmobile in New York. After a visit to a local urgent care and an X-ray, we were referred to Nemours Children’s Health, Lakeland—and from that moment on, everything was handled with such care and compassion. From the very first phone call, Nemours made us feel supported. They confirmed directions, sent all documents ahead of time, and ensured our arrival and appointment were seamless and right on schedule. We were met by smiles and kind staff from the very first interaction to the last. Every person we encountered treated Annistyn like she was their own—with warmth, patience, and expertise. Under the care of Kevin Osborne, PA-C, Annistyn was put in a sling for immobilization. One thing that truly stood out to me as a parent was how they spoke directly to Annistyn about her care. They didn’t just […]

Shanaya and her family live in Trinidad and Tobago. Around the time she turned 3, they began noticing a delay in her speech. While they pursued testing and therapy in their home country, the results weren’t clear, and they weren’t making progress. As Shanaya grew older, her family noticed she wasn’t engaging with others the way they expected. They found themselves going from appointment to appointment, but still without real answers or solutions. That’s when Rena, Shanaya’s mom, reached out to her sister in law who lives in Lake Nona, Florida. Her sister knew about Nemours Children’s Hospital, Florida and recommended exploring care options in Orlando. That advice – and introduction to the International Medicine Program at Nemours Children’s – set the family on a new path. Through a connection with Jordan Wadi, Nemours International Medicine Manager, the family began coordinating care with the Ear, Hearing and Communications Center. The […]

When doctors delivered the diagnosis of a cleft lip, Jackson’s parents found themselves at the start of a journey they hadn’t anticipated. During Christina’s 20-week anatomy scan, they learned about the condition and immediately began exploring care options to ensure Jackson’s well-being. During this process, Christina’s previous professional background at Nemours Children’s Hospital, Delaware played a significant role in their decision-making. For 10 years, she had dedicated herself to the care and support of families at Nemours Children’s, including three years working in the surgery clinics as a Surgical Medical Assistant and had the privilege of collaborating with the cleft team. Her firsthand experience with the hospital’s expertise and compassionate care gave her a unique perspective. At Nemours, Jackson’s family discovered not just a hospital but a community of care and support. Dr. Mario Aycart, the surgeon responsible for Jackson’s cleft lip repair, was clear and reassuring in his communication. […]

For Latisha, osteogenesis imperfecta (OI) has always been a part of life. Diagnosed around age 6 after multiple leg fractures, she knew the challenges that came with the condition. When she became a mother, she was determined to find the best possible care for her children. That search let her to Nemours Children’s Hospital, Delaware – the same place she had come to trust for her own care. Her children, Emerson and Lilly, were both diagnosed with Type 1 OI at birth. “Without the care from Dr. Franzone and the entire OI team, I’m not sure where my kids would be,” Latisha shared. OI, commonly known as brittle bone disease, is a genetic disorder that prevents the body from building strong bones. For Emerson, those fractures started early – he broke his leg three times in just one year after learning to walk. Lilly also faced fractures within months of […]