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Navigating Complex Urologic Care: A Family’s Journey

Abigail and Vivian’s path to Nemours Children’s was paved by challenges, each step bringing them closer to the answers they needed. Abigail, now 15 years old, was born with a neurogenic bladder, a condition where the bladder does not function properly due to nerve damage or dysfunction. This issue became apparent when the family started potty training her. For Abigail, this meant frequent accidents, infections, and discomfort, which were distressing for her and her family. Though it seemed like a common and simple problem in a young child, her mother, Brittany, recalls, “I just felt like there was something more here. So, everyone agreed, ‘You need to go to the best children’s hospital.’” Despite initial hesitation, she knew she had to seek expert care for her daughter. “For us, driving to Nemours is about an hour and a half each way. At first, I was hesitant because of the distance, […]

Back on the Ice: Jeffrey’s Story

Diagnosed with hemihypertrophy and leg length discrepancy at just 9 months old, Jeffrey has undergone a complex medical journey, spanning over a decade. His family chose Nemours Children’s Hospital, Delaware after researching top children’s hospitals near their home in Lehigh Valley, PA. His family was particularly drawn to Dr. Reid Nichols, who would become Jeffrey’s doctor for the next 11 years. Throughout his life, Jeffrey’s treatments have been multifaceted and challenging. Jeffrey underwent several procedures, including an iliotibial fasciotomy/tenotomy, femur shaft osteotomy, and the implantation of a Precice lengthening device, as well as hemiephysiodesis of the distal femur. These interventions were crucial in addressing his leg length discrepancy and associated complications. His mother Amber shares, “We are blessed that Dr. Nichols has been his doctor for 11 years and giving us the best treatment. Her upbeat outlook and confidence in her work gave us the motivation we needed to continue […]

Independence and Confidence: Braulin’s Story

Braulin’s family found out about their son’s diagnosis during Gissette’s pregnancy. Gissette noticed that her local doctor was sending her to do more sonograms and measurements than she had for her previous pregnancies, making Gissette nervous. It was during this time that her care team informed her that Braulin was diagnosed with dwarfism. After receiving the diagnosis, Gissette decided to explore new care options with experts that specialized in dwarfism. “In my country, the Dominican Republic, there wasn’t much information about how to treat or care for a child with dwarfism,” shares Gissette. “I had a lot of questions but no answers. This is when my journey of looking for answers on the internet started.” Through her research, Gissette was able to connect with other parents navigating dwarfism and Little People of America. Once Braulin was born, Gissette took several trips to the United States with Braulin to receive specialized […]

A Smooth Recovery: Karlee’s Story

12-year-old Karlee was riding her bike with her brother and cousin when a sudden mishap sent her tumbling to the ground, her left wrist bearing the brunt of the fall. The impact was immediate, and the pain was intense. “When I fell, I landed on my left wrist and felt a sharp pain in my arm,” Karlee recalls. After the accident, a trusted family member recommended they see Dr. John Lovejoy at Nemours Children’s Hospital, Florida. “All of my doctors and nurses at Nemours were really nice and made sure I was comfortable,” Karlee shares. From the moment she arrived, the team at Nemours took a compassionate approach, ensuring that Karlee felt at ease and understood every step of the process. “Dr. Lovejoy helped me understand what bones I broke and how they planned to fix them,” Karlee says. The detailed breakdown of her injuries and the treatment plan provided […]

Navigating Kidney Stones: Vincent’s Story

At 13 years old, Vincent found himself facing a painful and unexpected health challenge. What began as a nagging low back pain quickly escalated when he noticed blood in his urine. Alarmed, his family took him to urgent care, where the initial tests confirmed the presence of blood but also revealed a more serious issue: a kidney stone. The urgent care team, recognizing the severity, referred them to the Nemours Children’s Health, Lakeland and then to the hospital in Orlando for further evaluation. “I was nervous about the wait time, but their staff worked to fit us in quickly,” says Vincent’s mom, Jessica. “From the beginning, they were responsive and attentive.” The pain Vincent was experiencing disrupted every aspect of his daily life. “He couldn’t rest, enjoy his normal activities, or even feel comfortable sitting or lying down,” Jessica explains. “It was also very stressful for me as a parent […]

A Bright Future: Peter’s Story

Peter, a child with Down syndrome adopted from Hong Kong at the age of 3, has faced numerous health challenges throughout his life. His journey, including multiple surgeries and comprehensive care, is a testament to the importance of dedicated medical support. Peter’s health issues were first identified when his parents noticed he wasn’t thriving. After consulting several specialists, a podiatrist with training at Nemours Children’s referred them to Nemours Children’s Health. After several tests, Peter received a critical diagnosis: his C1-C2 vertebrae were not fused, posing a significant risk to his spinal cord. In September 2017, Peter underwent a lifesaving C1-C2 fusion surgery performed by Dr. William Mackenzie and Dr. Jeffrey Campbell at Nemours. Following the surgery, Peter showed remarkable improvements in various areas, including potty training, communication, and education. However, his journey was far from over as Peter was still experiencing complications with his foot. Further examinations with Dr. […]

Dancing Through Recovery: Sayuri’s Story

During an annual scoliosis screening at Sayuri’s middle school, one of the nurses noticed something unusual about her back. “I remember the nurse checking my back and pointing out that I twisted more to one side, and there was asymmetry with one side rising higher than the other,” Sayuri shares. “She told me that the case is most likely mild or moderate, as the condition was common and those of a higher severity were rare. I was sent home with a letter to my parents to get my back checked.” Sayuri’s initial X-rays confirmed the nurse’s suspicions. “When I got my x-rays done, I was told that I had moderate scoliosis, with a recommendation for a back brace to keep the curve from progressing,” says Sayuri. The diagnosis of adolescent idiopathic scoliosis, characterized by a severe S curve, meant that her life would require some adjustments. As Sayuri grew older, […]

Meet Allie Likely

Allie’s Light: Finding Support Through Nemours PATH

Meet Allie Likely. At just 12 years old, she was diagnosed with adjustment disorder with an anxious mood. Using the Pediatric Acute Telemental Health (PATH) program available at Nemours Children’s Health in Florida, Allie and her family found the care and tools they needed to move forward with confidence. Her mother remembers when she first noticed something was wrong. “It appeared as though she was losing her light,” she said. “As a parent, I tried talking to her but felt that she was holding back. I felt she needed to talk to someone, so I started looking for resources.” The changes in Allie’s behavior left her mom feeling uncertain and worried. “I noticed she wasn’t her usual self and was unsure if it was just the typical tween behavior, the newness of middle school, or the recent transition we had endured as a family. I felt as though I couldn’t reach my […]

From Patient to Future Doctor: Freya’s Story

In early May 2024, Freya was diagnosed with B-cell leukemia at just 5 years old. Her family’s world changed overnight. Support from Nemours Children’s helped them through. “Thankfully, everyone at the hospital has been incredibly supportive. They’ve not only provided expert care but also made us feel like part of a family, so we never felt alone. I connected with other families facing similar challenges, and I’m genuinely grateful we were guided to Nemours Children’s Hospital, Florida. I wouldn’t choose any other place for her care.” Freya’s mother credits Nemours Children’s and Dr. Douglas for giving her hope. “Knowing that she cares deeply makes me feel relieved about the continuation of Freya’s care. I’m confident she will ring the bell in August 2026. Even if that doesn’t happen, I know that Dr. Douglas will do everything possible to support Freya. I used to worry endlessly, losing sleep and not eating, […]

Healing with Hope: Faye’s Story

When Faye was just 8 years old, a severe car accident changed her life in an instant, leading her and her family to Nemours Children’s Hospital, Delaware for critical treatment and reconstructive surgeries. The accident was a shock to Faye’s family. It quickly became clear that Faye needed specialized care, and Nemours Children’s was the place that could provide it. “We owe every single nurse, doctor, physical therapist, etc. that had a hand in her recovery,” says Faye’s mom. “From the night we came in as at emergency to the care she still receives, everything. They ensured that she was heard and supported, we were heard and supported, and she walked out of the hospital after a month of a stay.” Faye’s initial treatment was focused on stabilizing her condition and addressing the most urgent injuries. However, the road to recovery was a long one. One of the first major […]

Back on the Mat: Alexa’s Story

Alexa, then 12 years old, had always been an active child, participating in various sports such as Jiu Jitsu. However, a previous knee injury that seemed minor at first, suddenly got worse. What started as a slight discomfort during physical activities escalated into persistent pain that made it difficult for her to participate in sports. As the pain began to increase, Alexa was referred to Nemours Children’s Sports Medicine Orthopedic Surgeon, Dr. Alvin Su. Under the care of Dr. Su and the team at Nemours Children’s Hospital, Delaware, Alexa was diagnosed with osteochondral defect (OCD). OCD is a condition where there is damage to the cartilage and the bone beneath it within a joint. This type of injury is commonly found in the knee, and it can be particularly debilitating for young athletes. “This condition didn’t allow me to return to sports and other strenuous activities, like Jiu Jitsu,” shares Alexa. After […]

Navigating Clubfoot: Sofia’s Story

For Sofia’s family, a routine pregnancy check-up took a surprising turn when an ultrasound revealed that Sofia would be born with a condition known as clubfoot. “As an infant, her feet were going inward and it was heartbreaking to see,” Sofia’s mom shares. Determined to give her daughter the best possible care, Sofia’s mom turned to the internet, where she discovered Dr. John Lovejoy and Nemours Children’s Hospital, Florida. The diagnosis of clubfoot had been unexpected, but the prospect of expert care and a promising treatment plan offered a glimmer of light. It was at Nemours Children’s Hospital Florida that they met Dr. Lovejoy, Chair of Orthopedics and Sports Medicine. Dr. Lovejoy recommended Sofia be started with casting using the Ponseti method. This treatment involved a series of castings, which were crucial for maintaining the corrected position of her foot. The process required regular weekly visits to Nemours as a […]

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