During a routine scoliosis check in school, Samantha received some alarming news. She was diagnosed with scoliosis and her spine had grown into an S shape. After meeting with multiple doctors and specialists, Samantha’s family decided to come to Nemours Children’s Hospital, Delaware to meet with Dr. Suken Shah, pediatric orthopedic surgeon. Due to the severity of the curve, Dr. Shah determined that a posterior spinal fusion was needed to correct her spine and prevent pain and disability in later life. Samantha was nervous but determined. She continued dancing, her passion, up until the day of her surgery. Her determination continued as she was able to stand within hours of her surgery, and walked the hospital halls the next day thanks to excellent pain management and the Nemours rapid recovery pathway.  She was also thrilled to learn she had grown a couple of Inches! Not sure she would ever dance again, Samantha […]

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 […]

Everyone is talking about “March Madness.” Many are tracking their brackets and bets closely. There is plenty of fun to be had cheering for our favorite basketball teams, but it’s also a good time to talk to your child about gambling. You may think this conversation can start when your child is old enough to step into a casino. But for many kids, gambling starts much earlier. Sports betting, lottery tickets, and card games often start in middle school. Some online games bring gambling right to kids’ phones and computers. And these days it’s hard to turn on the TV without seeing a commercial glamorizing the many new avenues for wagering. Here is some information to help you talk with your kids about gambling. What Is Online Gambling? Online gambling is any gambling done through the internet. Common types of online gambling include casino games (poker, slot machines) and sports […]

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 […]

Contributed by Emily’s mom Elizabeth. Emily is an AMAZING little girl! At 5-years-old, she is comfortable telling people she has a disability and that her muscles work differently than theirs do. Emily was born three months early and diagnosed with cerebral palsy when she was about a year and a half old. Both Emily and her identical twin sister, Sarah, were delayed in reaching their milestones, but Emily’s delays were more pronounced.  Emily is super determined and does everything she can to keep up with her peers. This requires A LOT of hard work! Emily does about 6-7 hours of therapy a week, a combination of PT, OT, and aqua therapy. Since she was about 3, Emily has received intermittent Botox injections to loosen her muscles and give her some additional flexibility and mobility. For example, she learned to walk with lofstrand crutches within 6 months, a task they rarely teach children her age given […]

We all know that terrible feeling of not being able to sleep and drudging through the next day in a fog. If your child is having trouble sleeping, of course you want to help. You have probably heard of using melatonin for sleep problems. Its use has skyrocketed in the past few years. Melatonin is a hormone (or chemical messenger) made by the brain. It helps us fall asleep. Melatonin is also made as a dietary supplement and can be bought in the U.S. without a prescription. But is melatonin safe for kids and teens? Does it work? If melatonin is used with guidance from a health care provider, it is probably safe for short-term use in kids over 5 years. It can help kids and teens get some rest while they work through certain types of sleep problems. But it is still being studied so we don’t know for sure what […]