Guest Contributor, Author at Nemours Blog

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Guest Contributor

It Takes A Village: Gabriella’s Story

In October 2016, three-year-old Gabriella’s and her family’s world changed in an instant. She was diagnosed with rhabdomyosarcoma, a type of cancer that affects soft tissue. For her parents, Melissa and Shawn, time seemed to stand still. “So many emotions to describe that minute and the minutes, days, hours, weeks, months, and years since…” Melissa shares. But as they look back, their focus is on gratitude—on the people who stood beside them, the care that lifted them up, and the hope that carried them forward. Gabriella’s journey began under the care of Dr. Thacker, orthopedic surgeon at Nemours Children’s Hospital, Delaware. “We remember the words he spoke to us,” Melissa recalled. “But more importantly, we remember that his tone and demeanor were filled with sympathy, concern, and hope.” From the very beginning, Dr. Thacker was more than a physician—he was a constant source of support. Through chemotherapy, amputation, infections, and […]

From Trauma to Triumph: Briar’s Story

10-year-old Briar is no stranger to adventure. An active and energetic boy, he loved riding his mini bike—until a life-changing accident on September 18, 2024, left him with serious injuries. While riding, Briar was hit by a car, suffering fractures to his leg, both hands, clavicle, and skull, as well as trauma to his leg and chest. He was stabilized at the scene and airlifted to Nemours Children’s Hospital, Delaware, where a team of experts was ready to provide the care he needed. Briar’s injuries required immediate attention. Upon arrival at Nemours Children’s, he was rushed into surgery to repair his leg and chest. His care team, including Dr. Duke (Trauma surgery), Dr. Trionfo (Orthopedic surgery), Bernadette Fulweiler, APN (Wound Care), and Dr. Haas (Rehab Medicine), worked together to ensure he had the best possible outcome. Katie, Briar’s mom, recalls the overwhelming emotions of that day. “When we landed at Nemours, I […]

Finding Support at Nemours Children’s: Zoey’s Story

At 19 years old, Zoey is pursuing her dream of becoming a hairstylist while managing a complex medical condition. For the past seven years, she has dealt with frequent bathroom trips, urinary retention, and persistent pelvic pain—challenges that have impacted her daily life. But through it all, she has found expert care and unwavering support at Nemours Children’s Health. Zoey’s symptoms began when she was just 13. She noticed she was using the restroom 15-30 times a day, with nights just as difficult. Despite constantly feeling like she needed to use the restroom, she was often unable to release urine. The discomfort affected her ability to focus in school, spend time with friends, and simply go about her day. “This condition has taken over the way I live,” Zoey shared. Zoey’s search for answers led her to Nemours Children’s Hospital, Florida, where she was connected with Dr. Hagerty, a urologist […]

Cerebral Palsy (CP) Q&A: Declan

Raising a child with cerebral palsy (CP) comes with unique challenges and triumphs. In this Q&A, Declan’s mom, Kianna, shares her family’s journey—from navigating his diagnosis to finding the right care team at Nemours Children’s Hospital, Delaware. She reflects on the impact of CP on their daily lives, the importance of expert support, and how Dr. Shrader and the CP team have given them hope for Declan’s future. What is the most challenging part of the day for Declan? Declan’s biggest day-to-day challenge is working around his mind-body interactions. He is a very active kid and loves to play games at recess with his friends, but his legs don’t always cooperate. He has always been able to find a way to adjust, but his competitive spirit means he gets frustrated with the limitations CP places on him. What is Declan’s favorite part of the day? Declan’s favorite part of the […]

Following His Dreams: Kollin’s Journey

At 12 years old, Kollin isn’t letting anything slow him down. A lifelong patient at Nemours Children’s Hospital, Delaware, Kollin’s journey to his narcolepsy diagnosis started when he found himself constantly exhausted. “My father has narcolepsy, so when I was tired all the time, my mom requested to have a sleep study done,” Kollin shares. A sleep study, also called a polysomnogram, is an overnight test that helps doctors diagnose sleep disorders, including narcolepsy. During the study, sensors are placed on different parts of the body to monitor breathing, brain activity, heart rate, and movement while a child sleeps. It provides essential information to guide treatment and improve sleep health. “I really don’t like sleep studies because of all the wires and goop in my hair,” shares Kollin. But after his second long sleep study, the results were clear—he had narcolepsy, just like his dad. The diagnosis meant he could […]

Cerebral Palsy Awareness Month: Rhy’lee’s Story

When Latoya welcomed her daughter, Rhy’lee, into the world, she had no idea how much resilience her little girl would have. Diagnosed at birth with hypoxic-ischemic encephalopathy (HIE), Rhy’lee spent her first 45 days in the hospital, relying on medical equipment to survive. Over time, her challenges became clearer—cerebral palsy, lung issues, and a need for a G-tube. For years, Rhy’lee faced constant hospital stays, battling lung complications that made life uncomfortable for both her and her family. “She was in and out of the hospital back-to-back,” Latoya recalls. “She was so uncomfortable.” It wasn’t until Rhy’lee was 5 that her parents, Latoya and Devon, were introduced to Nemours Children’s Hospital, Florida. A medical complex in downtown Orlando connected her with Dr. Aga Lewelt, and soon, Dr. Jason Malone and Dr. Alec Stall joined Rhy’lee’s care team. From that moment, everything changed. At Nemours, Rhy’lee’s family found more than expert […]

Allison: Tetralogy of Fallot, Hip Dysplasia and Ear Tubes

“Giving back and helping others is one of the best feelings. To know you helped someone when they were feeling scared and alone.” – Allison, Former Patient, Current Nemours Associate I’m Allison and I’m 26 years old and I work in the Nemours Cardiac Center at Nemours Children’s Hospital, Delaware in Wilmington. I was diagnosed at birth with Tetralogy of Fallot with anomalous origin of the anterior descending coronary artery from the right coronary artery. I had my first open heart surgery at 4 days old for the transannular patch to repair the ventricular septal defect (VSD). In all, I had three open heart surgeries (two in 1998 and one 2013), six cardiac catheterizations and two loop recorders (in 2020 and 2023, respectively). I was also diagnosed at birth with hip dysplasia in my left hip, and I wore a Pavlik harness [a shoulder harness that attaches to foot stirrups] […]

Cerebral Palsy Awareness Month: Logan’s Story

When Logan was born at just 31 weeks, his parents knew his journey would be anything but typical. After a complicated pregnancy and an early arrival, Logan faced significant medical challenges from the very start. Diagnosed with Periventricular Leukomalacia (PVL) and later with Cerebral Palsy and Autism, his early years were filled with therapies, surgeries, and specialists as his family sought the best possible care. Melissa, Logan’s mom, was determined to give her son every opportunity to thrive. From traveling to St. Louis for eye surgery and Selective Dorsal Rhizotomy (SDR) to consulting with a CP specialist in Texas, their family left no stone unturned. But when Logan was 8 years old and they were faced with the decision of hip surgery, their search led them to Nemours Children’s Hospital, Delaware, and Dr. Wade Shrader. The decision to pursue an osteotomy was not an easy one. “We consulted with numerous […]

A Bright Future Ahead: Piper’s Story

When Piper was just four months old, her parents faced an unexpected concern: their pediatrician noticed her head size was not typical. After a series of tests, Piper was diagnosed with microcephaly. By the time she was nine months old, she was missing developmental milestones, and by her second birthday, she had also been diagnosed with cerebral palsy. Piper’s journey also brought unique challenges with communication and mobility. As a nonverbal child, Piper relies on creative ways to express herself, and her family has embraced learning to understand her cues. Piper is also not yet mobile, affecting her ability to move around and get from one place to another on her own. In 2022, the family relocated to Florida and began researching the best care options for Piper. “We spent a lot of time looking for facilities that could meet Piper’s needs,” her mother, Christy explains. “Nemours was the best […]

Celebrating Rare Disease Day: Mia’s Story

Six-year-old Mia is a vibrant, outgoing little girl who lights up every room she enters. Born with several rare and complex medical conditions, Mia has already undergone more surgeries than many will face in a lifetime. Her resilience, boundless energy, love for singing and dancing, and dreams of becoming a nurse (or the next Taylor Swift!) inspire everyone around her. Mia’s medical journey began the day she was born, bringing with it a unique set of challenges. Diagnosed with Pierre Robin Sequence, complete tracheal rings, infantile scoliosis, hip dysplasia, ulnar dysplasia, an ectopic pelvic kidney, and clubfeet, Mia quickly showed she was ready to tackle whatever came her way. “Mia was immediately transported to Nemours Children’s Hospital, Delaware from our local hospital right after she was born,” shares her mother, Janelle. “She was in the NICU for 65 days. I drove back and forth, from Wildwood NJ to Wilmington DE, […]

Luca: Lactation Consultation

“…finding a good pediatrician is really important. It’s because of [this] we were able to discover Luca’s milk allergy so quickly.” – Luca’s mom, Meghan Luca was diagnosed [with cow milk protein intolerance, GERD and soy allergy] at 3 weeks when Dr. Kelly Brower decided to test his stool for blood, which came back positive. This, along with other symptoms he was experiencing like low weight gain, inconsolable crying and excessive loose stools, confirmed the diagnosis. In those early weeks, we saw Dr. Brower once or twice a week for weight checks and lactation support.  We have received nothing but exceptional care from Dr. Brower. We were so fortunate to see her for Luca’s first appointment after bringing him home. During that visit, she took the time to answer all our new-parent questions and even helped me with my breastfeeding challenges. I was struggling to get Luca to latch, and […]

A Heart Challenge: Aryana’s Story

Quote from mom: “Dr. Mehta, of course, is AMAZING! She is always happy and bubbly and she has the best laugh! We love it. She is so down to earth, but can be matter-of-fact when she needs to be, such as during this last visit with Aryana when she was discussing Aryana working – ha!” At around 24 weeks pregnant, my OB found fluid on Aryana’s kidneys and referred me to a specialist in Pensacola. I was told that this was normal, so I went alone. At the appointment, after many ultrasound images, the doctor abruptly shifted the conversation to Aryana’s heart. He gently explained that there was a hole in her heart, often seen in babies with Down syndrome, and suggested an amniocentesis for confirmation. A week later, I learned she had Trisomy 21 and was referred to Dr. Mary Mehta, whose caring team put me at ease. We […]

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