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Patient Stories

Before she was even born, Charlotte was diagnosed with Congenital Femoral Deficiency and Fibular Hemimelia, a rare condition that would shape her life in ways her family could never have anticipated. Congenital leg length discrepancies are when patients have legs that are different lengths. Femoral deficiency is characterized by a short or missing thighbone and fibular hemimelia by a short or missing fibula. “It was an incredibly emotional and uncertain time for us,” her mother, Melissa, recalls. The news was both a shock and a call to action. As soon as they received the diagnosis, her family was determined to understand the condition and find the best possible care for Charlotte. “We knew this would be a lifelong series of surgeries, rehabilitation, and specialized care,” her father, Brian, recalls. “There was a lot of anxiety and fear about what her future would look like and whether she would be able […]

Rayne, an active pre-teen, was participating in a fun day at school, playing a game of Capture the Flag. During the game, a sudden and unexpected fall resulted in Rayne’s leg hyperextending. The impact was severe, and her left tibia cracked at her knee. Her parents immediately rushed her to their local hospital in Lewes, DE. Upon arrival, the hospital staff performed an X-ray, which revealed the fracture. However, the fracture involved Rayne’s growth plate, a critical area that requires specialized care to ensure proper healing and prevent long-term complications. Recognizing the severity and the need for expert pediatric orthopedic care, the local doctors referred Rayne and her family to Nemours Children’s Hospital, Delaware. Without hesitation, Rayne’s parents packed up and made the two-hour drive to Nemours Children’s. Upon reaching Nemours, the family was greeted by a team of highly skilled and compassionate medical professionals. “We were terribly frightened,” Rayne’s […]

When Lex was just a baby, his pediatrician noticed something was off about the shape of his head, leading to a diagnosis of craniosynostosis, a condition where the skull’s sutures fuse prematurely. Craniosynostosis is when one or more seams between bones in a child’s skull close too soon. When this happens, the skull can’t grow properly and develops a different shape. Despite facing multiple surgeries and challenges, Lex and his family have found unwavering support and care at Nemours Children’s Hospital, Florida. Through it all, Lex has shown incredible resilience.  “His pediatrician noticed that his head shape was not normal and immediately referred us to Nemours,” shares Lex’s mother, Courtney. At Nemours Children’s the medical team conducted a series of tests and scans. In addition to the craniosynostosis, Lex was also found to have elevated cerebrospinal fluid (CSF) pressure, pituitary gland shrinkage, and a host of symptoms, including severe headaches […]

Hudson’s persistent symptoms of pain, feeding difficulties, and faltering growth left his mother, Heather, and her husband, searching for an explanation. Hudson’s condition had taken a toll on the family’s daily life. Heather shares, “Hudson would cry and be unsettled for numerous hours in a day. He would throw up his formula, and we had tried seven different types, hoping one would make a difference.” The constant vomiting made it nearly impossible to leave the house, and Heather had to resign from her 18-year career in Special Education to focus on her son’s care. Every day was a struggle, but Heather’s unwavering dedication and advocacy for her son never wavered. Determined to find answers, Heather and her husband reached out to multiple healthcare providers. It wasn’t until a CT scan at 6 months revealed brain swelling due to severe malnutrition that the true extent of Hudson’s condition became clear. “Prior […]

Born with a unilateral cleft lip and palate, Dylan’s journey has been marked by numerous surgeries and dedicated medical care. But it’s also a story of staying positive and forming lasting connections. A cleft of the lip or palate happens when a baby is born with an opening in the upper lip or the roof of the mouth (the palate). A cleft happens when parts of the lip and/or palate do not fuse together completely. For Dylan, this diagnosis has always been a part of his life. “I can’t really remember much from before then,” he reflects. “I always had the cleft lip and palate, and as a child, I thought it was normal. Every kid went through it.” When Dylan was around 5 years old, his family moved from California to Delaware. This relocation marked the beginning of his long-term relationship with Nemours Children’s Hospital, Delaware. “My mother had to […]

As someone who grew up in Delaware, even before I was diagnosed with type 1 diabetes, Nemours Children’s Health has always held a special place for me. During my medical school rotations, I found a mentor in Dr. Daniel Doyle, who showed me the profound impact of pediatric endocrinology. After completing my fellowship training in Philadelphia, I reached out. I was excited to learn that there was an opening for a pediatric endocrinologist at Nemours. It was the moment I had envisioned for so long finally coming to life! Beyond patient care, I’m fortunate to have the opportunity to participate in other activities, such as clinical research. This enables me to consider and investigate the issues my patients encounter, develop targeted interventions to assist them, and conduct trials to gain a deeper understanding of their disease processes, ultimately aiming to enhance their care in the future. I am so fortunate […]