Guest Contributor, Author at Nemours Blog

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World CP Day: Aryia’s Story

At just 7 years old, Aryia has already shown remarkable strength and resilience on her journey with cerebral palsy. Diagnosed at 10 months, Aryia has faced her challenges head-on with the help of her dedicated family and the orthopedic team at Nemours Children’s Hospital, Florida. It all started when Nina, Aryia’s mother, noticed something unusual after bringing her newborn daughter home. “Her legs would jerk constantly,” Nina recalls. But due to Aryia’s premature birth, doctors were hesitant to give a diagnosis right away. After a few months of evaluations, Aryia was officially diagnosed with cerebral palsy in September 2017. Before moving to Florida, Aryia’s family faced an overwhelming and complicated care plan while living in New York City. They frequently traveled between specialists, even going as far as Philadelphia for medical appointments. “Aryia’s muscle spasms caused her to cross her legs excessively, preventing her from standing or walking. We were […]

Lincoln’s Journey with Dwarfism (In Mom’s Words)

In 2019, while pregnant with my second son, we learned that he would be born with dwarfism. Though both my husband and I are on the short side of average height, we did not have a lot of experience with dwarfism and were unsure of how that would impact our son’s quality of life. We did what all parents would do and learned as much as we could about dwarfism and connected with other families. In June of 2019, Lincoln was born 12 weeks early due to other pregnancy complications. His dwarfism diagnosis became an afterthought, and the focus became getting him to eat and breathe on his own as we struggled through an extended NICU stay. After being released from the NICU, Lincoln was followed by a local pediatrician and medical team, but after having a short-term episode of paralysis at 2 years old, they referred us to Nemours […]

Amazingly Resilient: Addison’s Story

Meaghan remembers the early days of her daughter Addison’s life vividly. Diagnosed with a cleft palate just days after birth, Addison’s journey began with a challenge. “She was having a very difficult time breastfeeding and just didn’t seem interested in eating,” recalls Meaghan. Suspecting a possible lip tie, she asked a nurse to check Addison’s mouth. Instead, the nurse discovered a cleft palate. From that moment, Meaghan began the process of feeding Addison using a bottle with a valve. The cleft palate diagnosis impacted the Addison’s family’s daily routine significantly. With a 3-year-old son already keeping them busy, adjusting to Addison’s needs meant slowing down their usually fast-paced days. “In the very beginning, it would take about 45 minutes to an hour for one feeding,” says Meaghan. “With Addison struggling to eat, we had to take each day at a time.” However, with perseverance and patience, Addison began to improve […]

Back in the Game: Zander’s Story

Zander, an aspiring college football player, first crossed paths with Nemours Children’s Health after suffering a game-related injury. As luck would have it, Dr. Julia Fink, Nemours’ orthopedic specialist, was the team doctor on the field. After the game, Dr. Fink brought him in for an X-ray and MRI, setting the course for his recovery. The injury turned out to be an acromioclavicular joint separation (AC joint separation), which worsened during the state football championship game. Zander’s team went on to win the game, but his shoulder pain lingered, especially with throwing, even after physical therapy. To resolve the issue, Dr. Fink performed an AC joint reconstruction. Following surgery, Zander was in a sling for six weeks and underwent three months of physical therapy. By May, he was able to start his throwing program, and by August, he was ready to kick off the football season, stronger than ever. From […]

Urology Awareness Month: Kieva’s Story

10-year-old Kieva has faced many challenges in her young life. At the age of 3, she was diagnosed with bilateral vesicoureteral reflux (VUR), a condition that brought frequent UTIs and fevers. Kieva’s journey with VUR began after a series of high fevers and recurring UTIs left her parents, Tara and Tim, searching for answers. “The constant worry about whether a fever was another UTI and the potential damage being done to Kieva was overwhelming,” shares Tara, Kieva’s mom. “Each instance left us questioning if we had sought medical help in time and how this condition might impact her future.” Kieva’s condition led them to Nemours Children’s Hospital, Delaware, where they found the care and support they needed. Referred by Kieva’s primary care doctors at Nemours Children’s Health, Media, the family met with Dr. Figueroa, who quickly became a pillar of Kieva’s care. From the very first visit, Tara knew they […]

A Journey with Scoliosis and Chiari Malformation: Carter’s Story

When he was 9 months old, Carter’s parents began to notice something unusual about their son’s posture. His torso seemed to be veering in a different direction while standing upright. Concerned, they sought answers from Carter’s pediatrician, who referred them to pediatric orthopedic surgeon Dr. Suken Shah, Division Chief of the Nemours Spine and Scoliosis Center, and the Shands/MacEwen Endowed Chair of Orthopaedic Surgery at Nemours Children’s Hospital, Delaware. Here, Carter received a diagnosis of Early Onset Scoliosis and Chiari malformation. Scoliosis is a condition where the vertebrae in the spine form a curved line instead of being straight. Larger curves can lead to joint damage, arthritis, and pain, often requiring treatment such as back braces or surgery. Chiari malformation occurs when the cerebellum pushes downward through the foramen magnum, the opening at the base of the skull. It can cause symptoms such as headaches, balance issues, and numbness. Sometimes, […]

teenage girl having psychotherapy session at psychologist's office

Finding Hope: Leah’s Journey with Dialectical Behavior Therapy

When Leah was 16, she couldn’t think of a single reason to live. Leah was diagnosed with type 1 diabetes the previous summer, and since then, she and her parents had been constantly fighting about what she ate, her diabetes care, and how she spent her time. Leah started cutting herself to cope with the stress of her diagnosis and her relationship with her parents. Things only seemed to get worse. She felt like she couldn’t really trust the few friends that she had, and she seemed to always be fighting with her peers and teachers. When her girlfriend broke up with her, she decided she was “done.” Leah was hospitalized after an overdose, but during her inpatient stay, she was introduced to a psychologist from Nemours Children’s Hospital, Delaware. This psychologist suggested that Leah might benefit from participating in Dialectical Behavior Therapy, one of the few interventions proven helpful […]

A New Little Man: Joshua’s Story

Joshua, now 6 years old, was diagnosed with SMA Type 1 while still in utero. This condition, characterized by muscle weakness and atrophy, led to neuromuscular scoliosis, which was first observed when he was about 11 months old. He currently receives treatment from Nemours Children’s Hospital, Florida. For the first few years of his life, Joshua’s condition was a constant battle. “Joshua wore a back brace for at least 4.5 years, 24/7, with breaks only for bathing,” recalls his grandmother, Claudia. The brace was necessary to manage his scoliosis, but it made sitting up uncomfortable and exacerbated respiratory issues common in children with SMA. “Every cold or flu he caught turned into a hospital stay and intubation on several occasions,” shares Claudia. “SMA can cause respiratory distress, but the fact that Joshua’s lungs were restricted from growth because of scoliosis made it so much worse.” A pivotal moment in Joshua’s […]

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