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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 […]

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 […]

Help for Hungry Children - Summer Food Program and School Meals

Help for Hungry Children – Summer Food Program and School Meals

Summer and fun: two words that go hand-in-hand, especially when you’re talking about kids.  However, summer break looks very different for many children. For millions of children from low-income households across the U.S., summer months mean no access to school meals, which may sometimes be the only nutritious food available. And even more children will have less food on their table this year because of the COVID-19 pandemic. For summer 2021 and 2022, the USDA has launched a new summer food program that will help all low-income children of all ages have nutritious meals and snacks. School Meals Help Keep Kids Healthy During the school year, many schools provide students with access to meals through federal school meal programs like the National School Lunch Program and the School Breakfast Program. These programs are run by the U.S. Department of Agriculture and state agencies, who reimburse schools that provide healthy meals […]

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 […]

Nemours Launches “Do Gooders” Program

Nemours Launches “Do Gooders” Program

Each year associates at Nemours Children’s Health participate in Nemours Cares Week, proudly supporting the communities in which we live, work, heal, and play. Nemours associates from across our many locations donate their time, resources, and funds to help those in our communities who need it most. This year, even with COVID restrictions firmly in place, we were still able to package 1,600 pounds of food and over 2,600 essential items, all donated by Nemours associates. We sent more than 600 bags of items to our community partners and raised money through virtual food drives, providing over 12,000 meals to help fill the needs gap. New this year, Nemours launched the “Do Gooders” Program, which aims to support children who want to give back to their communities while also supporting self-esteem and creative thinking. Two incredibly creative young ladies were chosen this year, who saw their civic project come to life! […]

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 […]

Peaceful Protests

Peaceful Protests

With the current social unrest over police brutality related to the death of George Floyd and others, your children may ask questions about the protests that are happening nationwide. Here are some tips on how to respond to kids on what can be a divisive topic. State the facts I recommend that parents respond to tough questions from their kids with a simple statement of facts, followed by questions of their own. If a child asks, “What are these protests all about?” you might respond: “Many people are protesting the deaths of unarmed black women and men by police and others.” You might follow up by asking questions about what your child thinks about the protests, what they have heard (from friends, media, etc.) and what parts are confusing to them. Asking questions first will likely lead to a better conversation with your child. As you respond, try to help […]

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 […]

‘I’m sorry, but I don’t think he’s going to make it.’

‘I’m sorry, but I don’t think he’s going to make it.’: Brody’s Story

As originally posted on “Love What Matters,” written and submitted by mom, Marcella Stanley “‘I’m sorry, but I don’t think he’s going to make it.’ My husband and I sat flabbergasted, the tears instantly streaming while I struggled to breathe. A room filled with nearly a dozen people stared awkwardly at us as we faced every parent’s worst nightmare. This was not how this day was supposed to go. We found out exactly four weeks prior, at our 20-week ultrasound, that our baby boy had a form of dwarfism. The initial concern was that it was a lethal condition, due to the severity of his skeletal abnormalities and how early they presented in the pregnancy. However, my amazing local OB and maternal fetal medicine physicians researched, and after painstakingly detailed ultrasounds, determined our son likely had a non-lethal skeletal dysplasia. His limbs were awfully short, but his chest was average […]

Page 26 of 29

Page 26 of 29

Page 26 of 29