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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 […]

It was a wonderful yet traumatic time in our lives.  Even with the support and love from our families and friends, we still felt alone and confused. Who could possibly know what it’s like to be told that your beautiful baby boy will be born with a cleft lip and palate?   We were referred to Dr. E.J. Caterson, Chief, Plastic Surgery at Nemours Children’s Hospital, Delaware. During our first visit, Dr. Caterson shared with us that his passion for craniofacial surgery had been influenced by his youngest son who had been born with a cleft lip.  We immediately felt heard and understood on so many levels. His soft-spoken and kind demeanor, along with his genuine concern calmed our fears. His detailed surgical plan inspired confidence.  We trusted him.  Fred had his first corrective surgery at 4 months. He also had a GPP, which is not done at many institutions. The GPP […]

It was like any other ordinary day for 13-year-old Ashley. In eighth grade at the time, Ashley, from Washington Township, New Jersey, came home after a long day at school, hoping for a quick nap before heading to youth group that night. She headed to her fridge to grab a drink, and the next thing she remembers is waking up with paramedics surrounding her. “I was placed on oxygen and had an IV in my arm,” says Ashley, now 24. “The only thing that came to my mind was fear.” Ashley learned from doctors at her local hospital that 1 in 26 people may have a seizure within their lifespan, epilepsy related or not. After her electroencephalographs (EEGs) and an electrocardiography (EKG) results came back normal, Ashley and her family waited to see if she had any more seizures to determine if it might be epilepsy. “I had so much […]

This post was written by Nathan’s mom Kim Silpath “It’s not about me anymore, it’s about the other kids”- Nathan Every day, 43 parents have to hear the same words we heard a few years ago, “your child has cancer.” I still remember that moment, and the reaction from my son, Nathan. He was ready to fight it. Not just for himself, but fight and help other children with cancer too. I could not have been more proud. Nathan was an incredible child that had a passion for school, sports, and most importantly helping others.  He loved meteorology, biology, hiking, soccer, sled hockey, and football! Nathan’s cancer battle started in 2010 when he was at soccer practice and started mentioning how his leg was bothering him. Nathan noticed a bump on his leg, but like most kids, didn’t think much of it and continued playing soccer. As his pain increased, […]

This blog post is written by Larry, the father of Maddie, a medulloblastoma patient who survived a brain tumor at the age of 2. Larry inspires us by sharing his daughter’s story. “Heroism is endurance for one moment more.”      George F. Kennan In the fall of 2008, at the age of two, our daughter Maddie was diagnosed with medulloblastoma, a brain tumor that arises at the base of the brain and often spreads down through the spine via the spinal fluid. Over the course of the next ten months, Maddie underwent multiple brain and spine surgeries and intense chemotherapy protocols at Nemours/Alfred I. duPont Hospital for Children. After six cycles of chemo treatment, she had made amazing progress, knocking out 90% of her original disease. Because her scans were not completely cancer-free, she then went through an additional six weeks of radiation therapy. Conquering Cancer The effects of radiation on a 3-year-old can […]

This blog post is written by Amy, the mother of Dan, a mucopolysaccharidosis (MPS) patient who passed away in 2016 at the age of 19. Amy is a Nemours nurse and her son’s story inspires us and others every day. When Dan was born in September 1996, we were told he was a healthy baby. He joined his sister, Haley, who was 2 years old and we thought our lives were perfect. We had this sweet little family with a precious little girl and strapping baby boy. We had just moved to a new house, both had good jobs, life was good. As Dan developed, he hit all his milestones except for one; he wasn’t talking by the age of 2. He had about 20 ear infections in his first 2 years of life and the pediatrician thought his lack of language was due to him not hearing well. We went to an ENT at […]