Guest Contributor, Author at Nemours Blog - Page 5 of 29

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Jacksonville DiaBesties Camp: Evie’s Journey

Thanks entirely to the generous support of our donors, Nemours Children’s Health, Jacksonville, in collaboration with Wolfson Children’s Hospital, hosts the Jacksonville DiaBesties Camp. This free five-day camp — the only one of its kind in our community — provides kids with diabetes from Northeast Florida and Southeast Georgia the opportunity to enjoy a traditional camp experience in a medically-safe environment. Our team of physicians, nurses, diabetes educators, social worker, psychologists, and volunteers donate their time to ensure this camp is accessible to all families, regardless of their resources. The benefits of camp are extensive and transformative. Children can spend time with others who understand their journey, fostering long-lasting relationships. They receive psychosocial support, increase their ability to manage their diabetes care independently, and more. Jacksonville DiaBesties Camp is not just a camp — it’s a community that allows children with diabetes to understand their disease better and learn how […]

Coordinated Care: Micah’s Story

Micah’s journey began with some unexpected twists and turns, before he even entered this world. “Before Micah was born, we received the news that he might have Down syndrome through routine blood work during pregnancy,” shares his mother, Kaitlyn. “It was a whirlwind of emotions, but we leaned on the support and expertise of Nemours from the very beginning.” Kaitlyn’s family have been seeing providers at Nemours Children’s throughout the Delaware Valley ever since her firstborn arrived prematurely. Her GYN office recommended Nemours Children’s, and they found the care to be exceptional, so they continued with Micah’s treatment there. It was his team at Nemours that diagnosed Micah with Trisomy 21, commonly known as Down syndrome, along with clubfoot and a cardiac concern – coarctation of the aorta. Nemours became their beacon of hope, with a multidisciplinary team ready to address Micah’s complex needs. From the Trisomy 21 Clinic to […]

Angels in Scrubs: Kimberly’s Story

When Kimberly’s son was 4 years old, he ran to answer the phone—his favorite uncle was calling. As he ran into the carpeted family room, he tripped and fell, head-first into the brick fireplace. Kimberly says, “As we know, head lacerations bleed profusely. However, being my first child, having his first major injury, and being pregnant with my second child, I was an absolute mess. My training First Aid Training from being in the fire service went right out the window, as it was now my child injured.” Within all her panic, Kimberly immediately knew the best care for her child and knew exactly where to take him. “Born and raised in Philadelphia and moving to Delaware in my teens, I always heard about Nemours Children’s Hospital, Delaware. ‘Take your child to Nemours Children’s’ ‘Nemours is the best,’ but I never had to go there myself, so I had no […]

A Beautiful Future Ahead: Joshua’s Story

Joshua’s story begins with his 20-week anatomy scan, which revealed signs of a lower urinary tract obstruction. Born with underdeveloped and cystic kidneys, he was diagnosed with chronic kidney disease. Holly, Joshua’s mother, recalls, “We were told before his birth that if he survived, he would need dialysis to bridge him to a kidney transplant.” “Joshua’s condition has been difficult since birth,” shares Holly. “He had frequent labs, appointments, hospitalizations, and dialysis. His treatments have always been a bridge to transplant. He was medically fragile which impacted the entire family. We have spent much of his life isolating and with limited activity. Despite all this, we know that God is good and we have relied on our faith to help us through the difficult years.” A pivotal moment in Joshua’s journey came when Nemours Children’s Health entered their lives. Recommended by their local medical team, Joshua’s family transitioned to care […]

Koal’s Aortic Stenosis Journey

I still remember the day Koal was born like it was yesterday. Just giving birth and hearing the daunting words that our sweet baby boy had a heart problem right away was enough to make any parent panic. At birth, Koal was diagnosed with aortic stenosis. Koal had a heart cath procedure at just 1 day old. They went in through the groin and into the heart with a balloon to open up the aortic valve. He had this procedure done again at 3 months old. After that, it was years of doctor appointments, testing, and imaging to monitor it. When he turned 15, he finally had open heart surgery to replace his aortic valve. As he grew older, Koal struggled with getting winded when running and when he tried to play the trumpet in a band, even just regular playing. Certain medicines would cause his heart to beat extra fast which would make […]

A Fulfilling Adventure: Julieta’s Story

When Julieta was just 1 month old, she was diagnosed with Spinal Muscular Atrophy type 1 (SMA Type 1). SMA is a rare genetic condition that causes muscle weakness and atrophy, significantly impacting Julieta’s ability to walk, sit up, and control her head movements. It also affected her ability to speak and eat. Julieta’s mother, Melissa, recalls the initial shock and heartbreak that accompanied the diagnosis: “After I got the call with her results, I was told by five neurologists that she was not going to make it past 1 year of age. Obviously, this put me in a sad and grieving mental state. We as a family were devastated.” Shortly after receiving her diagnosis, Julieta was referred to Nemours Children’s Hospital, Florida by a neurologist in Miami. “After I visited Nemours and felt finally safe and with big hopes for my daughter, I went back to Dr. Miller in […]

Capable of Anything: Riley’s Story

Riley’s diagnosis with cerebral palsy became apparent when her family noticed she wasn’t hitting the typical milestones. “I was not walking at 18 months old,” she recalls. “It was recommended that I have an evaluation by PT and OT specialists after seeing my pediatrician,” leading to her diagnosis of cerebral palsy shortly after. Prior to treatment at Nemours Children’s Hospital, Delaware, Riley faced the challenges of cerebral palsy. “I had very big bunions on both feet, which made walking and running long distances very painful,” she shares. “I had a very limited range of motion due to my CP, that made running, walking, and swimming difficult on my muscles. I couldn’t wear a lot of shoes, like sandals and flats.” However, Riley’s life took a turn for the better when she discovered Nemours Children’s in Wilmington, Delaware through the recommendations of peers who had undergone similar journeys. “My family found […]

Cleft and Craniofacial Awareness Month: Brody’s Story

Brody’s journey with Nemours Children’s began before he was even born. During a routine anatomy scan, Beth and her husband learned that one of their twins, Brody, would be born with a cleft lip and possibly a cleft palate. “I was pregnant with twins through IVF and was sent to Nemours Fetal Care,” shares Beth. “After finding out about Brody’s diagnosis, we did a lot of research and compared to teams in Tampa. After a facetime with Dr. Kellogg to ask him questions, we knew we found Brody’s doctor and team.” Upon Brody’s birth, he encountered difficulties due to his cleft lip and palate. “Prior to surgical intervention, Brody struggled with feedings; milk would come out his nose, he drooled a lot, and I don’t think he was able to hear well,” Beth shared. These challenges emphasized the need for specialized care, which they found at Nemours Children’s Hospital, Florida. […]

The Comeback: Maddy’s Story

For elite gymnast Maddy, the journey to greatness wasn’t without its hurdles. But with determination and the expert care at Nemours Children’s Health, Maddy is back on her feet, ready to conquer the mat once again. Maddy’s athletic career took an unexpected turn on January 25, 2023, during a routine practice session at Temple University. A gymnast on the collegiate team, she faced a setback that would challenge her both physically and mentally—a ruptured Achilles tendon. Before receiving treatment at Nemours Children’s, Maddy experienced the full weight of her injury. “I was unable to walk, move my foot in any direction, and do everyday activities like go to class,” she recalls. “I was also in an abundance of pain every day that led to many mental breakdowns.” Having received treatment from Nemours Children’s Health, Jacksonville for years growing up, she knew she would get exceptional care for her new injury. […]

18 Years Cancer-Free: Andrew’s Story

When Andrew, now 28, reflects on his journey with Nemours Children’s Health, he describes it as nothing short of miraculous. Diagnosed with hepatoblastoma that had metastasized to his lungs and brain as a child, Andrew’s journey to recovery has been thanks to his expert medical care and unwavering support system. In November 1999, 3-year-old Andrew woke up in the middle of the night complaining of shoulder and abdomen pain. His parents, concerned, took him to the pediatrician in Augusta, Georgia, where appendicitis was initially suspected, and surgery scheduled. However, a perceptive surgeon, recalling a rare medical condition from his studies, insisted on further tests. The results were alarming: Andrew’s cancer markers were sky-high, pointing to a serious diagnosis. The local medical team quickly realized they needed specialized help, so he was transferred to a children’s hospital. The surgeons there reached out to Dr. Adela Casas-Melley, who was working at Nemours […]

Pursuing a Passion for Child Life ­­– Associate Spotlight: Kathryn Sparger

Kathryn Sparger’s journey to becoming a Certified Child Life Specialist was inspired by her sister, who witnessed the incredible impact child life specialists have on patients and their families during her time in nursing school. This insight sparked Kathryn’s interest and set her on a path that she quickly fell in love with. “Child life is such a special career path,” Kathryn shares. “I’m so grateful to our kids and families who have invited me into their lives to care for them.” Kathryn always knew that Nemours Children’s Health was the place she wanted to be a part of. The supportive and mission-driven environment at our hospital in Orlando has allowed her to thrive and provide the best care possible for her patients. Working with the Hematology and Oncology team has been one of the highlights of Kathryn’s career. “I absolutely love my hem/onc team. They are true heroes. They […]

Enjoying Each Moment: Alek’s Story

Alek is a courageous patient whose journey with severe kyphoscoliosis led him across the globe to Nemours Children’s Hospital, Delaware. Kyphoscoliosis is a dangerous condition that affects the spine. It causes an abnormal curve in two directions, side to side and front to back. It is a combination of two other conditions: kyphosis, which causes a severely rounded appearance of the back, and scoliosis, where the vertebrae form a curvature instead of being straight. Alek’s diagnosis unfolded in Poland in 2010 when he was a young boy. The road ahead seemed daunting as his condition gradually worsened. “Before starting treatment at Nemours Children’s, Aleksander’s condition was very bad,” shares his family. “He had trouble with breathing and couldn’t eat and walk. He lived in chronic pain.” It wasn’t until after a failed operation in Poland that Alek’s family discovered Nemours Children’s. Referred by their physician in Poland, Alek and his […]

Page 5 of 29

Page 5 of 29

Page 5 of 29