Guest Contributor, Author at Nemours Blog | Expert Guidance on Children's Health and Wellness

Blonde child in green swimsuit smiles while playing in the pool

PATIENT STORIES

June’s Story (In Mom’s Words)

Walking into June’s routine wellness checkup, I expected the usual and we received a reassuring, positive report that told us our daughter was thriving. Before the appointment ended, I shared one remaining concern my husband had asked me to mention: that one of June’s legs appeared slightly shorter than the other. The doctor reexamined June on the table, extended her legs, and noted the difference. She immediately wrote a referral for an X-ray and recommended we have it done right away. We went directly next door for imaging, and later that same day the pediatrician called to confirm that the X-ray showed Developmental Dysplasia of the Hip (DDH). June was a happy, thriving baby who met her milestones and appeared unaffected in her day-to-day activities. Because there were no obvious limitations, the diagnosis was a complete shock to us. We learned about Nemours Children’s the same day we received June’s […]

Boy with helmet on smiles and waves for a photo while riding in a go kart

PATIENT STORIES

Cerebral Palsy Awareness Month: Dylan’s Story

At just 3 years old, Dylan received a diagnosis that would change his life. With a dedicated family who refused to settle when it came to their son’s care, they were led to Nemours Children’s Hospital, Delaware where they finally found the answers and understanding they needed. From the time he was just 6 months old, Dylan had been receiving physical and occupational therapy through early intervention services with a local care team. However, as Dylan approached his third birthday, a significant hurdle loomed on the horizon. Without a formal diagnosis, he was at risk of losing these vital services. Brandi, Dylan’s mom, recalls the frustration and anxiety of those early years. “We weren’t having any luck with our original care team to get a diagnosis. Our PT recommended Nemours Children’s, she had other parents that had gone there and were very happy.” The family decided to take the therapist’s […]

Girl playing wheelchair basketball smiles for a photo

PATIENT STORIES

Whole Child Care: Sarah’s Story

When Sarah’s parents first learned about their unborn daughter’s diagnosis, they faced a future filled with unknowns. Sarah was diagnosed with arthrogryposis while still in utero, marking the beginning of a journey that would require extraordinary medical expertise. “Upon learning that our unborn child would have a physical disability, we began trying to plan for the unknown,” shares Sarah’s mom, Kerstin. “We soon realized that the unknowns would continue, and we had to embrace each one as they came.” Finding the Right Team As Sarah grew, so did the challenges. “Life changed and we sought out the best for Sarah,” Kerstin explains. “She had difficulty eating, difficulty moving her limbs, and was not meeting the developmental milestones. As she grew and became more complex, we realized we needed a more comprehensive team of doctors.” At an arthrogryposis conference, the family met orthopedic surgeon, Dr. Reid Nichols and physical therapist Reenee […]

PATIENT STORIES

ENT Awareness Month: Jeremiah’s Story

For Aleecia, Jeremiah’s mom, the first few days of her newborn’s life were filled with a mix of joy and growing concern. Jeremiah was born with no voice, a stark contrast to the usual cries of a newborn. The absence of his voice was the first indication that something was amiss. After just three days, ENT specialists at Nemours Children’s Hospital, Delaware made a startling discovery: Jeremiah’s vocal cords were fused together, a rare and life-threatening condition known as congenital laryngeal web. Aleecia found herself thrust into a role she never imagined she would have to play. “The inability to breathe or cry properly meant we were in a state of immediate crisis from the moment he was born,” she recalls. “It was a frightening diagnosis that required immediate, specialized intervention.” The urgency of the situation was evident, and the surgical team at Nemours Children’s wasted no time in preparing […]

PATIENT STORIES

Phoenix’s Journey: A Story of Faith, Resilience, and Compassionate Care (In Mom’s Words)

Early in my pregnancy, we learned from an OBGYN that our daughter would face a series of complex medical challenges — her left eye had not fully developed, she had agenesis of the corpus callosum, and significant spine and ribcage abnormalities. These findings led to a diagnosis of Aicardi Syndrome. When the doctor shared the diagnosis, his initial recommendation was to consider terminating the pregnancy, then he left us to process the devastating news in disbelief and sorrow. In that moment of heartbreak and confusion, we chose faith. We decided we would not give up on our child or on God. From that day forward, we made a promise to always champion our daughter’s life and advocate for her future, no matter what challenges lay ahead. We left that doctor were soon referred to and followed by another high-risk maternal-fetal team, where we continued to receive compassionate and specialized care […]

Teen patient and doctor smiling for a selfie

PATIENT STORIES

From Patient to Future Physician: Garikoitz’s Story

At 11 years old, music was Garikoitz’s passion, but something was standing in the way. As a young violinist, he found himself constantly falling behind during rehearsals, arriving late on every note. What seemed like a simple coordination issue was actually something far more significant: a hearing problem that was affecting every aspect of Garikoitz’s life. In the classroom, teachers mistook his struggles for attention difficulties. “In reality, I just wasn’t receiving information fast enough to respond,” says Garikoitz. He felt stuck, unable to keep pace through no fault of his own. His mother sensed that something deeper was at play and made the decision to seek help at Nemours Children’s Hospital, Florida. A Compassionate Approach to Care From the moment they walked through the doors, the family was met with warmth and understanding. Audiologists Teresa C. Tray and Elyssa McRae conducted comprehensive hearing evaluations, quickly pinpointing the underlying issue. […]

Teen girl and her orthopedic surgeon smile together for a photo in a hospital clinic room.

ALL BLOGS

Care You Can Trust: Alena’s Story

At 20 weeks into her pregnancy, Valerie, Alena’s mom, received concerning news during a routine ultrasound: the long bones in Alena’s body weren’t measuring as they should. This unexpected finding led to a series of discussions with medical professionals. Two months after Alena’s birth, the diagnosis of Femoral Hypoplasia with Unusual Facies Syndrome (FHUFS) was confirmed. This rare genetic disorder is characterized by underdeveloped femurs, growth restrictions, and distinctive facial features. Alena’s journey with this syndrome has been a complex one, involving a variety of adaptive tools and treatments. “I use a walker, wheelchair, crutches, leg braces, and have a lift in my left shoe,” Alena explains. In an effort to address her growing needs, Alena and her family sought out orthopedic expertise. Alena’s case was referred to Dr. Shawn Standard, a specialist in pediatric orthopedics, who was based in Baltimore at the time. “We started receiving treatment from Dr. […]

Girl with striped shirt and blue headphones poses in front of a white wall.

ALL BLOGS

Strength and Comfort: Makyla’s Story

Makyla’s mom, Myisha, was told during a routine ultrasound that her daughter would be born with a rare and complex condition known as Chondrodysplasia punctata and Conradi-Hunermann. This genetic disorder affects bone and cartilage development, leading to a variety of physical and medical issues. As Makyla grew, her spine began to curve more and more, making it difficult for her to walk long distances without struggling to breathe. “Her spine’s curvature also put pressure on her organs, making it hard for them to function properly,” says Myisha. In 2018, after years of seeking the best possible care, Myisha received a recommendation from another health organization to bring Makyla to Nemours Children’s Hospital, Florida. Nemours Children’s, known for its expertise in treating complex pediatric cases, was the ray of hope they had been searching for. The hospital’s multidisciplinary approach and specialized care offered a new path forward for Makyla. Walking through […]

ALL BLOGS

Navigating Scoliosis Surgery: A Family’s Insights

At Nemours Children’s Hospital, Delaware, families like Ali’s find comprehensive care for scoliosis. Her family’s story is one of resilience and hope, and their experience provides valuable insights for other kids and parents facing similar challenges. Ali’s Experience with Scoliosis Ali was diagnosed with scoliosis during a visit to her primary care office. Scoliosis is a condition where the vertebrae form a curved line instead of being straight, which can cause health problems. Her growth chart stalled and then reversed, prompting X-rays. After a bad experience at another facility, the family turned to Nemours Children’s Hospital, Delaware for a second opinion where they found a warm and welcoming environment. There, Dr. Suken Shah directly engaged with Ali, understanding her experience and exploring treatment options. Ali tried bracing and underwent an intensive physical therapy plan; however, her spinal curve continued to progress. At her second visit, Dr. Shah recommended she move […]

ALL BLOGS

Associate Highlight: Annaleza Jones, ATC

As the new full-time Athletic Trainer for Lakeland High School, Annaleza Jones, ATC, brings a wealth of experience and a passion for sports. The summer between her sophomore and junior year of high school, Annaleza seized an opportunity that would solidify her career path. “I went to a week-long Sports Medicine camp at Ball State University and fell in love with athletic training,” she shares. “I went back to my high school athletic trainer and started helping him in between sports seasons.” She found a sense of fulfillment in helping others, “Being able to stay involved with sports and help others is the best and I have no clue what else I would do if I wasn’t an athletic trainer.” After high school, Annaleza attended Manchester University in Indiana, where she earned her Bachelor of Science in Athletic Training in 2012. she continued her education at California University of Pennsylvania, […]

PATIENT STORIES

Zyanali’s Story

Born with microtia, a condition where the outer ear is smaller and sometimes misshapen, Zyanali’s right ear was visibly different from birth. “While it is mild, it was visibly obvious that it was not normal,” her mother shares. Microtia is a congenital condition, meaning it is present at birth, and it can vary in severity. In Zyanali’s case, the condition was more about the appearance of her ear rather than a significant hearing impairment. However, the visual difference was noticeable enough to draw attention and curiosity from others. As Zyanali grew, the social impact of her condition became more apparent. “She would often come home from school and tell me that kids were asking about her ear,” says her mother. These questions, while innocent, could be distressing for a young child. “We faced similar inquiries in public, people wanting to know what had happened to her ear or whether she […]

PATIENT STORIES

The Future of Spine Surgery: Sam’s Story

13-year-old Sam has been a patient at Nemours Children’s Health for much of his life. Born with a rare, unbalanced translocation, a chromosomal condition that affects many parts of the body, he lives with global developmental delays and several chronic health concerns. Throughout his life, Sam and his family have worked closely with a wide range of Nemours Children’s specialists. “We have been seeing Nemours specialists since Sam was itty bitty,” shares his mother, Audrey. “Over the years, he has been under the care of orthopedics, audiology, cardiology, pulmonology, surgical services, the gastrointestinal department, nutritionists, and neurology. We have seen quite a lot of the hospital and a lot of the doctors over the years.” Among the many medical challenges Sam faced was scoliosis, a condition in which the vertebrae form a curved line instead of being straight. “Sam was born with a group of congenital birth defects including some […]

POSTED BY: Guest Contributor

POSTED BY:
Guest Contributor