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Patient Stories

Contributed by Alexis. At the age of twelve when I hit puberty, my back started bothering me a lot. I made an appointment with my pediatrician, where I learned I was developing scoliosis. She referred me to Nemours Children’s Hospital, Delaware, where I met with pediatric orthopedic surgeon, Dr. Suken Shah for further examination. After an x-ray, we found that I had two curves measuring 22 and 23 degrees. A few months later, I received a brace to prevent my spine from getting worse. My scoliosis made my hips so off-balance that it affected my legs. I was also given a lift to wear in my shoe because my left leg was about an inch shorter than my right leg. I was supposed to wear the brace at least 18 hours a day, but I usually wore it for about 23 hours a day. I ended up wearing the brace […]

If resilience had a name, it would be that of 12-year-old Emilee. She was born with a complex heart defect called single ventricle that required heart surgery when she was just 2 days old. Her fighting spirit endured through three more heart surgeries and several heart catheterizations. Her heart surgeon, Dr. Christian Pizarro, assisted by cardiac anesthesiologist, Dr. Ellen Spurrier, and their highly specialized team—cared for her–watching over Emilee day and night. It was a scary and unsettling time for her family, who stayed right by her side. Through it all, Emilee thrived. But her health challenges continued.  Emilee was diagnosed with scoliosis that progressed to the point that surgery was needed.  In January 2022, she underwent a spinal fusion, a major surgery for anyone, but especially risky for someone with a single ventricle heart defect. Pediatric spine surgeon, Dr. Peter Gabos, performed the complicated operation with Dr. Spurrier again […]

Contributed by Vincent’s mom Tamara. When my father died of a heart attack at the age of 39, I was only 4 years old. It was very hard on me and I always feared that I would have a heart problem or my kids would have one. Our pediatrician recommended that both my son and daughter be seen by a cardiologist to be sure that their hearts were healthy. She asked that I get my children cleared by the cardiologist, so of course; I called Nemours Children’s Health, since we’ve had previous appointments there. My daughter and son both had an EKG;  Dr. Steven Ritz, our Nemours pediatric cardiologist, said that something showed up on Vincent’s EKG and that he would need to have an ultrasound. Dr. Ritz went over his findings in detail with us. Vincent was diagnosed with Wolff-Parkinson-White (WPW) Syndrome, a condition in which he has an extra electrical […]

Back in February of 2016, I started experiencing horrible palpitations, and decided one day to go get it to check out. I was immediately diagnosed with (WPW) -Wolff-Parkinson-White syndrome. After my first heart ablation, everything went smoothly. I was back to doing all the sports I loved like track and cheer! I was living life to the fullest. However, a couple of months later, I started to have the same palpitations, along with being super tired and getting dizzy. The doctor I originally went to had moved away, so my mom who is a nurse, did her research, and we decided to switch over to Nemours Children’s Health.  Seeing a cardiologist there, I had my second heart ablation in December 2016. I was 14 years old and have had two heart ablations! The surgery was quick, and I was told that everything looked good, they said. I recovered perfectly and […]

Jeylainie’s life as a normal 9-year-old changed abruptly in September 2021. Her mother, Keyla, noticed that Jeylainie’s skin was turning yellow and becoming jaundiced. Soon after, Jeylainie started complaining of a stomachache that would not stop. Her mother took her to a local children’s hospital, where she was admitted. Her doctors initially thought she had kidney stones, then did a biopsy to determine what was wrong. But Jeylainie’s health continued to deteriorate rapidly. After her doctors spoke with Nemours Children’s Solid Organ Transplant team, Jeylainie was transferred to Nemours Children’s Hospital, Delaware for more specialized care. Jeylainie’s diagnosis was hepatitis, an acute inflammation that causes damage like scarring to the liver. Since her liver was so damaged, she needed a liver transplant quickly. Keyla says, “It was crazy – Jeylainie is a healthy eater who loves her veggies, it was surprising to see her health go downhill so quickly.” While […]

Contributed by Maria’s dad Shahid. When Maria was 10 months old, we noticed some abnormalities in her chest and back, but we weren’t able to find a hospital or doctor who understood her situation.  She was frequently ill with pneumonia and breathing was painful. Her condition eventually worsened.   When she was 18 months old, we met a doctor in Peshawar, Pakistan who diagnosed Maria with MPS. It was our first time hearing the word MPS (Mucopolysaccharidosis), so we did online research and reached out to other families. Unfortunately, there is no treatment for rare diseases in Pakistan and there was no family to guide us for diagnosis and treatment. I sent Maria’s bio-samples to India, and Germany where they confirmed that she had MPS, but they were unable to determine her type of MPS. So, I sent her samples to the US and a diagnosis with MPS IV was […]