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Patient Stories

Eloise, a dynamic and determined young girl, received a diagnosis of cerebral palsy just before her second birthday.  After Eloise celebrated her first birthday, her parents assumed she would start walking soon, but as each month passed by, despite their initial hopes and patience, Eloise had still not taken her first steps.  Her parents recall the pivotal moment when, at 18 months, Eloise was referred by her primary care physician for evaluations and specialized care. Their journey led them to Nemours Children’s Hospital, Delaware where Eloise underwent a series of comprehensive evaluations, including MRI, EKG, and X-rays. While the test results appeared normal, Eloise was diagnosed with spastic diplegic cerebral palsy due to her muscle spasticity and gait difficulties.  Eloise’s family learned to their surprise that in a majority of cases, the specific cause of cerebral palsy is unknown.  Eloise took her first steps shortly before her 2nd birthday, albeit […]

Last July, I was in the car going for a normal drive with my parents when suddenly the unthinkable happened. Our car flipped over and I was ejected 30 ft from the car. I had suffered a traumatic brain injury (TBI) with left hemiparesis. Due to the seriousness of my injuries, I was immediately airlifted to Nemours Children’s Hospital, Delaware. For my first month in the hospital, I was in the Intensive Care Unit (ICU). At the start of my second month in the hospital, I spent most of my time in rehab. I had to learn how to talk, walk, and eat solid foods all over again. I also had to spend about 3 months in a wheelchair.   When I was initially released from the hospital I continued to go to therapy 5 days a week. But life at home was now different. I had to walk around the […]

Dillan’s hearing loss was discovered during a routine hearing scan, revealing that she was deaf in her left ear. While Dillan’s family had noticed some challenges with communicating before seeking treatment at Nemours Children’s Hospital, Florida, they were shocked to learn this news. Her family was very eager to find answers and solutions. Having been involved with the groundbreaking of Nemours Children’s Hospital, Florida 10 years ago, Dillan’s family was drawn to the comprehensive care provided under one roof. “Nemours provided seamless care. I love being able to communicate with her doctors in real time,” says Dillan’s mom. With the help of Dr. Morgan Wilcox, Dillan now has a hearing aid for her left ear, making an incredible difference in her hearing. “From the first day I met her, Dillan is always smiling and just has this contagious, feel-good attitude that you can’t help but smile and laugh along with […]

Madison’s dysplasia journey began even before she came into the world. During pregnancy, concerns arose as she was smaller than expected. However it was only after her birth, when she was diagnosed with hip dysplasia, that the first signs of something more complex emerged. X-rays at four months old revealed trident acetabulum and an s-shaped scoliosis, so a skeletal dysplasia genetic testing panel followed, identifying changes in B3GALT6. Variants in this gene are associated with a rare skeletal dysplasia known as spondyloepimetaphyseal dysplasia joint laxity type 1 (SEMDJL1). This condition can cause issues like progressive scoliosis, joint laxity/dislocations, and more. When they found out about her diagnosis, Madi’s family faced uncertainties about what her future might look like. However, Madi’s fiery spirit has shone through. She charms everyone she meets with her sassy personality and infectious joy. Madison’s mom, Anna, emphasizes that her daughter has never allowed anything to hinder […]

When Valerie was 5 years old, Brant and I noticed her energy and endurance greatly decreasing. She was unable to run for more than a minute or even go on a quarter mile walk without needing breaks and getting winded. Her endurance seemed to take a sharp turn for the worse in the summer later that year. She developed abdominal bloating. Her ability to play outside with her brothers or neighborhood friends was becoming increasingly difficult. She also would become overheated easily; she couldn’t be outside in the summer heat for long at all before needing to go back inside to the AC. Her appetite also started to dwindle. All her symptoms reached a level of concern to the point where we needed to investigate a solution with the help of medical professionals. After lab work with the pediatrician to rule out things like diabetes, celiac, and Crohn’s, they performed […]

During Liane Rensing’s 20-week ultrasound, it was discovered that her baby, Mila, had a cleft lip. This diagnosis expanded when Mila was born with a right-sided incomplete unilateral cleft lip and a complete cleft palate. The first year of her life brought challenges to the Rensing family as they learned to navigate caring for Mila. “We learned how to feed and take care of her with feeding devices like special nipples and bottles,” explains Liane. “We had to figure out how to tape specifically designed appliances to Mila’s nose and forehead to prepare her for her cleft surgeries. Miami felt like our second home since we traveled there for Mila’s numerous surgeries and appointments.” In their pursuit of finding the best care for Mila as she grew older, the Rensing family discovered Nemours Children’s Health. Their first experience with Nemours Children’s was with an audiology test and sleep consultations with […]