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Guest Contributors

Wait No More: Nearly All Kids Can Now Get the COVID-19 Vaccine

Many parents are breathing a sigh of relief that they can finally get their babies, toddlers, and preschoolers vaccinated against COVID-19. Two brands of the vaccine have now been authorized for children as young as 6 months old, so the little ones can now join the ranks of people ages 5 and up who have helped protect themselves. So does your young child really need a COVID-19 vaccine? After all, younger children often have milder illness when they get infected. The answer is a resounding “yes,” since many young children have had serious symptoms requiring hospitalization, and some have even died. Small children can even develop long COVID, with symptoms that bother them for a long time. Parents might also wonder why it took so long for the vaccines to be authorized for this age group. It took a long time to get the vaccines authorized for young children because […]

An International Search of Hope- Maria’s Story

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 […]

Achieving Milestones with a Disability- Emily’s Cerebral Palsy Journey

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 […]

The Emotional Rollercoaster of a Cleft Lip and Palate Diagnosis: Fred’s Story

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 […]

Advocating for Maternal and Child Health – Why It’s Essential

Advocating for Maternal and Child Health – Why It’s Essential

About 700 mothers die each year from pregnancy-related causes in this country, with about 60% of these deaths considered to be preventable. Black mothers are 3-4x more likely to die from pregnancy-related complications than White women, and are at higher risk of giving birth to pre-term babies. Black babies are 2x more likely to die as infants than White babies. The Nemours National Office is advocating on Capitol Hill to address these disparities to help give all moms and babies the opportunity to be healthy. Along with March of Dimes (MOD), Children’s Hospital of Philadelphia (CHOP) and the Ann & Robert H. Lurie Children’s Hospital of Chicago, we are partnering on the Hot Topics in Neonatology: 2021 Cindy Pellegrini Maternal & Child Health Advocacy Event. This virtual event honors Cindy Pellegrini who passed away in 2019, leaving behind a legacy as a tireless advocate for maternal and child health. It […]

Ashley's Epilepsy Story -- From Fear to Fearless

Ashley’s Epilepsy Story — From Fear to Fearless

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 […]

Nathan's Story

Nathan’s Story of Determination

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, […]

Celebrating Each Moment with Cancer in the Rearview

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 […]

Dynamic Dan!

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 […]

Cancer During COVID: David's Story

David’s Story: Battling Cancer During COVID-19

David came into our life on March 12, 2019. A beautiful baby boy, David was the perfect addition to our family of now four. In the first months, everything was normal. David was growing fine and hitting each of his milestones. Until one November week, when David wasn’t his normal cheerful 8-month-old self. At first, we blamed it on the antibiotics he had just started a few days prior to treating a “scalp infection” we thought he had. My gut kept telling me something was wrong; this was not the side effect of the antibiotics. David was pale, his stomach was bloated and he refused to eat. We rushed him to the nearest emergency room where they ran blood tests, ultrasounds, X-rays, etc. It was after all the tests came back that the emergency doctor came in to tell us his blood test results. “Your son has cancer.” How did […]

Mother holding smiling baby Jude up

Joy Like Jude

We found hope at Nemours. This is where we learned how to fight. The doctors at Nemours explained the realities of this difficult diagnosis, but they did it in a way that was also filled with hope. They told us that Jude would write his own story. They taught us how to fight for him, care for him and advocate for him. We drive from Charlotte to Wilmington, Delaware for Jude to receive his medical care at Nemours with the incredible team there.

Anthony’s Scoliosis Journey

This post was written by Anthony’s mom, Debbie.  “Something was Different” Anthony was about six months old when I started to notice something was different about his back. He would roll over and try to sit up and there was an obvious bulge/curvature in his spine. I took him to my pediatrician who told me there wasn’t anything to worry about. He informed me that some children take a bit longer to sit up on their own. At this time, I had two-year-old twins at home and was very aware that children progress differently, but there was no overlooking the curve of his spine. Unhappy with that visit, I scheduled an appointment with a specialist at a hospital in Philadelphia, PA. Finally a Diagnosis Anthony was about a year old when he was diagnosed with infantile scoliosis. My family was with me in the room when the doctor put his […]

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