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Patient Stories

When Andrew, now 28, reflects on his journey with Nemours Children’s Health, he describes it as nothing short of miraculous. Diagnosed with hepatoblastoma that had metastasized to his lungs and brain as a child, Andrew’s journey to recovery has been thanks to his expert medical care and unwavering support system. In November 1999, 3-year-old Andrew woke up in the middle of the night complaining of shoulder and abdomen pain. His parents, concerned, took him to the pediatrician in Augusta, Georgia, where appendicitis was initially suspected, and surgery scheduled. However, a perceptive surgeon, recalling a rare medical condition from his studies, insisted on further tests. The results were alarming: Andrew’s cancer markers were sky-high, pointing to a serious diagnosis. The local medical team quickly realized they needed specialized help, so he was transferred to a children’s hospital. The surgeons there reached out to Dr. Adela Casas-Melley, who was working at Nemours […]

Alek is a courageous patient whose journey with severe kyphoscoliosis led him across the globe to Nemours Children’s Hospital, Delaware. Kyphoscoliosis is a dangerous condition that affects the spine. It causes an abnormal curve in two directions, side to side and front to back. It is a combination of two other conditions: kyphosis, which causes a severely rounded appearance of the back, and scoliosis, where the vertebrae form a curvature instead of being straight. Alek’s diagnosis unfolded in Poland in 2010 when he was a young boy. The road ahead seemed daunting as his condition gradually worsened. “Before starting treatment at Nemours Children’s, Aleksander’s condition was very bad,” shares his family. “He had trouble with breathing and couldn’t eat and walk. He lived in chronic pain.” It wasn’t until after a failed operation in Poland that Alek’s family discovered Nemours Children’s. Referred by their physician in Poland, Alek and his […]

At 11 months old, Georgia has already shown incredible resilience and strength throughout her life. Diagnosed with isolated nonsyndromic unilateral craniosynostosis at 8 weeks of age, Georgia’s journey has been a whirlwind of medical appointments, treatments, and hopeful recovery. Karin and Edwin knew early on that something was different about their daughter, Georgia’s, head shape. They voiced their concerns during her 1-month and 2-month check-ups. At her 2-month appointment, the nurse practitioner conducted a thorough examination. It was then that they noticed an absence of the soft spot on the top of Georgia’s head. This was a critical moment for her family. Craniosynostosis is a condition where one or more seams between the bones in a child’s skull close too soon. This premature closure prevents the skull from growing properly and results in an abnormal head shape. If left untreated, craniosynostosis can increase intracranial pressure, leading to developmental problems, headaches, […]

Our precious newborn, Lottie was the cutest bundle of joy we could have ever imagined. At just weeks old, our pediatrician noticed a heart murmur at her routine visit. We had no idea until a visit to the Nemours Children’s Cardiac Center in Delaware that she had any cardiac issues whatsoever. After an echocardiogram, Lottie was diagnosed with Tetralogy of Fallot (TOF). Her diagnosis included TOF with valvar and subvalvar pulmonary stenosis, with large secundum ASD and additional posterior muscular VSD.  After we received Lottie’s diagnosis, we were very anxious, knowing our child could have “TET spells” a condition where she would have had lack of oxygen and blood to her organs, including her brain. Constant monitoring and always watching for any signs, knowing that her condition was inevitably going to worsen. As a nurse, I knew immediately she would need open heart surgery and I felt like my whole world came […]

When Marina was just 6 months old, her family noticed something unusual—her neck often fell to one side. This seemingly minor issue led to a series of medical consultations and diagnoses that would shape the future for Marina and her family. Diagnosed with torticollis and abnormally low muscle tone (hypotonia) by her pediatrician, Marina was referred to a neurologist at Nemours Children’s Hospital, Florida for further evaluation. Upon consulting with Nemours Children’s specialists, it was discovered that she was experiencing frequent seizures. “Various specialists conducted studies, leading to the discovery of congenital cytomegalovirus on February 2, 2022, just after her first birthday,” shares her mother, Kenialys. “This news left us shocked, confused, sad, anxious, and scared. However, the dedicated care from healthcare professionals at Nemours helped us regain optimism and hope for Marina’s future.” Cytomegalovirus (CMV) is closely related to the viruses responsible for chickenpox and mononucleosis (mono). Babies infected […]

Jessica, 12-year-old Billy’s mother, recalls the summer of 2022 when they noticed something unusual during their family getaway. “While on vacation, we discovered he had an anal fistula,” she recounts. In April of the following year, Billy experienced his first flare-up, ultimately leading to a diagnosis of Crohn’s disease. Located in their hometown, Nemours Children’s Hospital, Florida became a regular visit for Jessica and Billy. “We have lived in Lake Nona for over 11 years,” says Jessica, so they were already familiar with the Nemours Children’s location. From the moment they stepped through the doors, they were greeted by a team of dedicated professionals led by gastroenterologist Dr. Pablo Palomo. Reflecting on their experiences with the Nemours team, Jessica highlights the genuine care and compassion in each interaction. “Billy’s liked everyone he’s ever interacted with,” says Jessica. “My favorite thing about them is how special they make me feel, even […]