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CHA Family Advocacy Week

Family Advocacy Week: Nemours Patients Share Their Stories

This past year and a half has been tough on all of us, especially our children and youth. For so many, the COVID-19 pandemic has changed life as we know it. But for Nemours patients Kate and Sebastian, the pandemic is just one of many life-changing events they’ve faced. And that’s why they are both sharing their medical journeys to members of Congress during the 2021 Children’s Hospital Association (CHA) “Speak Now for Kids’ Family Advocacy Week,” to increase awareness about the ongoing and essential care provided by children’s hospitals. Kate’s Story When she was just 2 years old, Kate McKinery was diagnosed with optic pathway glioma, a brain tumor that interferes with her optic nerve and impacts her sight. The tumor also causes hormone deficiencies, resulting in abnormal liver function, type 2 diabetes and a full height potential of around 4’2. Kate has undergone multiple procedures, tests and appointments […]

The bridge to a brighter future

The bridge to a brighter future

When Erin Pitts faced spinal surgery as a teen, she never imagined it would impact her life in other ways. Diagnosed with scoliosis at a young age, initially the care plan for the Jacksonville, Fla., resident was to pursue a non-surgical approach to correct the curves in her spine using a back brace. When her complex scoliosis proved resistant to treatment, however, surgery became the best option for long-term results. The experience ended up changing not only her health, but also her career trajectory. Pitts first learned of her condition in the sixth grade, when she began experiencing intense lower back pain. As her condition gradually began limiting her daily activities, her mom made an appointment with her pediatrician. He referred her to Nemours for an orthopedic assessment, where she became a patient of Eric Loveless, MD, department chair of orthopedics at Nemours and a board-certified pediatric surgeon who performs […]

Precision Medicine Saves Lives: One Family’s Story | Promise: Powered by Nemours Children's Health System

Precision Medicine Saves Lives: One Family’s Story

When one-year-old Piper’s body began to swell one afternoon, her parents thought she was having an allergic reaction. They had no idea that they were about to embark on a journey of rare illness, complex treatments, and advocacy for children’s health. Piper’s parents, Erin and Chris Lee, took their daughter to her pediatrician, expecting a quick diagnosis and an easy solution. But Piper wasn’t allergic to anything. Instead, they learned her kidneys were failing; Piper would have to be admitted to Nemours/Alfred I. duPont Hospital for Children immediately. There, pediatric nephrologists proposed genetic testing for Piper. That’s because, although it was clear that Piper’s kidney function was declining, the cause of her decline wasn’t so obvious. In order to proceed with the best treatment for Piper, her doctors needed to know just what kind of kidney disease they were dealing with. They needed the help of precision medicine, a newer […]

Meet Emmy: An Atrial Septal Defect Success Story | Promise: Powered by Nemours Children's Health System

Meet Emmy: An Atrial Septal Defect Success Story

When Jill’s third child, Emmy, was born with a hole in her heart, Jill wasn’t too worried. Her two older sons also had the condition—called Atrial Septal Defect (ASD)—and theirs had cleared up over time. In children with ASD, blood recirculates inside the heart, and doesn’t reach the rest of the body as well as it should. Dr. Mary Mehta, Pediatric Cardiologist at Nemours Children’s Specialty Care, Pensacola, worked with the family to track Emmy’s condition. It didn’t improve, and it soon became clear that Emmy would need complex and invasive surgery to repair the hole in her heart. When Emmy was just three years old, the right side of her heart began to enlarge, presenting more risks: asthma-like symptoms and other coronary issues.  It was time to prepare for open heart surgery. Emmy’s family met with Dr. Peter Wearden, Cardiothoracic Surgeon at the Nemours Cardiac Center at Nemours Children’s Hospital […]

This toddler with a rare disease got a life-changing treatment. Why can’t all kids?

This article originally appeared in STAT on December 15, 2016. When 6-month-old Asher Camp was diagnosed with type 1 spinal muscular atrophy, a leading genetic cause of infant mortality, his family measured his life in days, not years. They dreaded the future, wondering how much time they would have with their beautiful baby boy. Parents of children with type 1 spinal muscular atrophy aren’t guaranteed to see their baby’s first steps, first day at school, or other treasured milestones that make up a child’s life. Instead, they watch anxiously as developmental milestones are missed, as common colds require trips to the emergency room, and as hope fades for reaching the day when a cure becomes available. Asher got lucky. He was able to take advantage of a life-changing opportunity, the kind that needs to be available to all children. Just a month after Asher’s parents, Amanda and Jeremy Camp of Lakeland, […]

Bald Is Beautiful: Losing Locks for Childhood Cancer

A brave contingent of donors had their heads shaved to raise funds and awareness for childhood cancer at a recent Nemours-sponsored St. Baldrick’s Foundation event, held at Iron Hill Brewery on the Wilmington Riverfront. St. Baldrick’s supports the Nemours Center for Cancer and Blood Disorders at Nemours/Alfred I. duPont Hospital for Children by supplying all new patients and their families with a “day pack” filled with bilingual resource materials to help guide them through the overwhelming experience of a childhood cancer diagnosis. Among the “shavees” was Candice Morris, a home health nurse from Magnolia, Del., who was inspired by one of her young patients’ bravery in the face of cancer. About 30 minutes after Candice submitted to the razor, her mother and son went for it, too! Many thanks to the volunteer stylists from Currie of Wilmington, Iron Hill for providing a private room, and event organizers/Nemours oncology nurses Nicole Roselli and […]

Nemours Patients Sparkle at “Fire and Ice” Prom

The guests arrived at the Nemours/Alfred I. duPont Hospital for Children’s 2016 “Fire and Ice” prom in glittering gowns and sharp suits, groomed to perfection and shivering a little on a breezy April evening. They exited classic cars that had chauffeured them to the hospital, letting their illness take a back seat on this festive evening. They danced, posed for photos, laughed and reveled with nearly 100 fellow Nemours patients who are facing or recovering from serious health concerns. The Nemours prom, a labor of love for dedicated staff and volunteers, is now in its fourth year. Teens with cancer, sickle cell disease, heart and kidney disease, and other conditions are treated to a themed extravaganza that rivals any high school prom. An outpouring of community support ensures the guests enjoy a wonderful event at no cost to their families. Dresses, tuxedos, makeup and hair styling, food, decorations, gifts, music and photography are […]

My New Perspective: A Sports Medicine Provider, Now Also a Sports Parent

Injury Prevention for the Throwing Athlete…Overuse Injuries in Young Athletes…Sport Specialization – Avoiding the Pitfalls of Too Much Time in One Sport…Concussions in Youth Sports…These are just a few of the talks that I have given over the past five years to parents and coaches of young athletes. As the manager of the sports therapy program at the Nemours Center for Sports Medicine, I have seen, firsthand, all of the problems that can accompany the increasingly high demands of youth sports. I have always enjoyed the opportunity to speak with these groups about what they can do to try to reduce the chance of their little athlete becoming another statistic in the growing epidemic of injured youth athletes. Talking to parents is especially gratifying, and I would prepare by pouring over the ever-growing research being published on the causes of overuse injuries and what can be done to prevent them. All […]

Arthrogryposis: Meeting Peers for a Day, Making Friends for Life

When you hear statistics like “1 in 3,000” or “only 104,000 in the U.S.,” it’s hard to feel like others understand what you’re going through with a rare condition such as arthrogryposis. So, imagine how wonderful it must have felt for the nearly 130 people who gathered for the Arthrogryposis Mini Meet-Up recently held at Nemours/Alfred I. duPont Hospital for Children in Wilmington, Del. A condition of the joints and muscles, arthrogryposis impairs children’s abilities to use their shoulders, wrists, fingers and lower extremities. There are many variations — some mild, some severe. There is no cure for arthrogryposis, but there are treatments that can help to maintain and maximize a child’s range of motion and function. The goal of the Mini Meet-Up was to bring together kids and adults with arthrogryposis so they could share their stories, their experiences and their support with each other. And, perhaps most important, […]

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