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Beyond Expectations: Brody’s Diastrophic Dysplasia

At Marcella’s 20-week ultrasound, she learned that her unborn child, Brody, had skeletal dysplasia. This news caused a whirlwind of emotions, but little did she know that this journey would lead her to the incredible team at Nemours Children’s Hospital, Delaware, setting them on a path of resilience and discovery. With this news, Marcella dove into gathering information to understand the unique challenges that Brody might face. Although they lived in Wichita, KS, her research led her to the Nemours Children’s Orthopedics team. Brody’s first appointment at Nemours didn’t come until six months, although Marcella was in touch with the skeletal dysplasia team shortly after he was born. She connected with Colleen Ditro, DNP, CPNP who would become an integral part of Brody’s journey. As Brody came into the world, so did a definitive diagnosis of diastrophic dysplasia, a rare genetic condition that causes dwarfism. Their local NICU was ill-equipped to […]

A World of Difference: Sawyer’s Story

In 2023, Stephanie, a mom and homeschool teacher from Virginia, found herself expecting her fourth child. Little did she know, this journey would lead her family to Nemours Children’s Health, bringing them expert care for her newborn son, Sawyer, who was diagnosed with osteogenesis imperfecta (OI) a condition that affects bone strength. In someone with OI, bones may break (fracture) easily, resulting from minor trauma or no clear cause. Before Sawyer’s arrival, Chris and Stephanie’s life felt complete with their three children: Cassie, Evan, and Eli. While unexpected, the news of a new addition to the family was quickly met with surprise and excitement. The entire family eagerly prepared for their newest member’s arrival. On a whim, Stephanie decided to take advantage of an extra ultrasound through a free service that was offered at her Pregnancy Resource Center. She wanted her other children to be involved and thought this was […]

From Immobility to Independence: Yanex’s Story

Yanex’s story began at just nine months old, when his primary care physician noticed something amiss. Keyshla, his mother, recalls that during a routine check-up, she expressed concerns about Yanex’s lack of developmental progress. He wasn’t attempting to sit or crawl, and his movements were limited to lifting his head when placed face down. However, it was Yanex’s head shape that raised the most concern for his doctor. During this check-up, Yanex’s physician ordered an X-ray. That day, the report arrived with a diagnosis of craniosynostosis. Craniosynostosis, a problem where one or more seams between bones in a child’s skull closes too soon, had a significant impact on Yanex’s life prior to treatment. “Yanex only looked comfortable when he was in the car seat, stroller, swing or while being held,” says Keyshla. “He was also exclusively breastfeeding for over a year. Yanex was not independent in the slightest, as if […]

From Pain to Pirouettes: Katie’s Story

In the world of competitive dance, every movement is crucial. For Kiara “Katie” Rodriguez, her dance journey took an unexpected turn when, at the age of 15, when she began experiencing hip pain. What felt like a pulled muscle led her to Nemours Children’s Health, Celebration, where she met with her pediatrician, Dr. Janette Magarino. “We all agreed it might be a pulled muscle,” says Katie. “So, we were told to rest and ice the area and take an anti-inflammatory. However, being the type to not complain, I would just dance through the pain.” As a dedicated dancer, Katie spends five hours a day, six days a week perfecting her craft. As she continued to dance, the pain got worse. “When I was home, the pain was unbearable and at times would leave me screaming or crying,” says Katie. “I couldn’t deal with the pain so I often would lose […]

22q Awareness Day: Jason’s Story

Jason’s story began with a seemingly innocent complaint, ear pain. Concerned for her son, Andrea Salicia vividly remembers the moment she first suspected something was wrong with her son Jason. While feeding him, she noticed that he was twitching, and it didn’t appear to be normal newborn behavior. A few days later, in a terrifying incident, Jason began gasping for air during a feeding, followed by a more severe twitch. Panicked, Salicia rushed him to the Nemours Children’s Hospital, Florida emergency room. It was there that a nurse informed her that Jason’s “twitches” were actually seizures, prompting further investigation. This nurse also thought that he might have a condition called DiGeorge syndrome but didn’t want to say anything until it was confirmed. The medical team then performed a spinal tap and various tests, which led to a diagnosis of 22q11.2 deletion syndrome, also known as 22q or DiGeorge syndrome, at […]

Arianna’s Journey with Bilateral Retinoblastoma (In Mom’s Words)

Para leer este blog en español, haz clic aquí! It all began when Arianna was just one year old. We noticed that one of her eyes was red and had a strange white spot in her pupil. Worried, we took her to her pediatrician, who immediately sensed that something was not right. We were referred to an ophthalmologist and then to a hospital, where she was diagnosed with a large mass in her eye. This mass was pushing her eye outward, so an emergency surgery was performed that same day to remove it. The surgery was successful, or so we thought. However, a few days later, the pathology results delivered the most devastating news: the mass was malignant. It was cancer. Arianna began chemotherapy treatment, going through six exhausting sessions. After that, she was discharged, but unfortunately, proper follow-up was not done to evaluate her other eye. Three years later, […]

An Unexpected Illness: Jason’s Story

Jason’s story began with a seemingly innocent complaint, ear pain. Concerned for her son, Andrea promptly scheduled an appointment with their Nemours Children’s Health primary care pediatrician, Dr. John Clore. Initially, the diagnosis appeared to be a mild outer ear infection. However, later that day Jason began vomiting consistently. The family returned to Dr. Clore’s office, who advised them to seek emergency care at our hospital. Little did they know that this visit would mark the start of a challenging journey. Jason was tested for various illnesses, including strep, flu, and COVID-19, but all the results came back negative. It wasn’t until they reached the emergency room at Nemours Children’s Hospital, Florida that the real diagnosis was discovered – strep A in Jason’s bloodstream. Jason developed a rare complication from his infection of severely increased intracranial pressure. This led to constant excruciating head pain and double vision. He was at significant […]

Just Keep Swimming: Braelynn’s Story

During Stephanie’s pregnancy, a routine ultrasound at 12 weeks revealed that Braelynn’s left leg was not developing as expected. Shortly after this discovery, the family was introduced to Dr. Louise Reid Nichols. Dr. Nichols delivered the diagnosis of Fibular Hemimelia (FH), a congenital condition affecting the development of the fibula bone in the leg. Stephanie’s doctors referred the family to Nemours Children’s Hospital, Delaware when she was just 20 weeks pregnant. From the moment they stepped through the doors, Nemours became more than just a hospital; it became a place of hope, compassion, and support. After several appointments with Nemours, Braelynn’s family learned that her left leg needed to be amputated. She would receive a prosthetic and attend physical and occupational therapy sessions. What stands out most about Braelynn’s journey at Nemours is the connection that was developed between Braelynn and her care team. “The Nemours Orthopedic Department has been […]

Jade’s Scoliosis Story

Jade has always been passionate about dance and yoga. One of her favorite hobbies is practicing yoga with her aunt. When Jade was 11 years old, her aunt noticed that her left rib was bulging out during one of their yoga stretches. This realization, along with Jade’s complaints of back and rib pain, raised concerns for her parents, especially since her mother was diagnosed with severe scoliosis at a young age. Based on her experience, Jade’s mom knew she had to act quickly so she immediately scheduled an appointment with their pediatrician to get a back check. At age 11, Jade was diagnosed with scoliosis and recommended to Nemours Children’s Health, Jacksonville. Jade and her family met with Anna Rambo, MD, an orthopedic surgeon at Nemours Children’s Health, Jacksonville. After their first appointment, they knew they made the right decision in choosing Nemours. They immediately loved everything about Dr. Rambo. […]

Olivia’s Amblyopia Journey

Follow Olivia’s inspiring journey through amblyopia treatment, where patching and glasses restored her vision to 20/20. Discover valuable insights into pediatric eye care and research at Nemours Children’s Health.

Page 8 of 14

Page 8 of 14

Page 8 of 14