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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 […]

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 […]

Questions about osteogenesis imperfecta (OI), or “brittle bone disease,” are answered by pediatric orthopedics experts at Nemours Children’s Health. Q: When should people with OI get rods in the bones in the legs? A: We view realigning and rodding the bones in the legs, femurs and the tibias as a way to address deformity or bowing that is interfering with each patient’s motor development or causing recurrent fractures. We feel there is no minimum age, this is something that we really do value, continually assessing on an individualized basis to help each patient reach their potential. Q: How would you describe the use of orthotics in patients with OI? A: The word orthotics generally refers to all types of braces or things we put on patients’ arms or legs to help them function better. We use them on a case-by-case basis. Years ago we used to use heavy long leg […]

In this video, recorded on June 2, 2021, Kenneth Alexander, MD, PhD, Division Chief, Infectious Diseases at Nemours Children’s Hospital, and April Novotny, RN, MSN, CEN, CENP, Chief Nurse Executive and Vice President of Clinical Services at Lakeland Regional Health, share the latest updates on the COVID-19 vaccine for kids, as well as insights on how COVID-19 has been impacting children and what parents can do to help their children have a safe summer and a successful return to school in the fall. Learn more about: How COVID-19 is impacting kids today How to talk with your teen about the COVID-19 vaccine Why your child shouldn’t get the COVID-19 vaccine at the same time as routine vaccines Tips for safely rejoining society after being vaccinated If you have a question for Dr. Alexander, post it in the comments section on Facebook. If my child already had covid, do they still need the […]

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 […]