After years of searching for answers, Katelyn finally receives a diagnosis at Nemours Children’s Health with lymphangiectasia, a rare condition causing protein loss

After years of searching for answers, Katelyn finally receives a diagnosis at Nemours Children’s Health with lymphangiectasia, a rare condition causing protein loss
When Courtney was pregnant with her son Brendan, her physician noticed something was off. During an ultrasound, they discovered that Brendan had an enlarged bowel, which can be a sign of cystic fibrosis. When Brendan was born in November of 2022, he was immediately placed in the NICU. “This was already planned and why we delivered in the Advanced Delivery Unit at Nemours Children’s Hospital,” explains Courtney. “The team was remarkable. Dr. Chou and our nurse, Mo, made a nerve-racking delivery as easy and seamless as possible. It was nothing but a great experience, considering the circumstances.” At only a day and a half old, Brendan had surgery. “During the surgery, they found that a part of the bowel had twisted on itself, causing it to not function properly,” says Courtney. “That day, they removed 30 cm of bowel and started the use of a colostomy bag. Then we had a 6-week healing […]
When Gaby was four years old, her family noticed that she was barely talking, was frequently losing her balance, and experiencing severe migraines. After going through many tests, including a sleep study, they found out that she had Chiari malformation. As Gaby continued to grow, her doctors uncovered more diagnoses including scoliosis, postural orthostatic tachycardia syndrome (POTS), Tethered Cord, Syringomyelia, secondary Hydrocephalus PTSD, among many others. Gaby was seeing a plethora of doctors and undergoing several different therapies, surgeries, and medications. However, her family was having difficulty finding doctors that specialized in Gaby’s conditions in Tampa. After doing some research, Gaby’s mom, Diana, found Nemours Children’s Hospital, Florida. Their first visit at Nemours Children’s was with the neurology team in Orlando when Gaby was about nine years old. “As a parent who has dealt with so many doctors, I have experienced doctors who don’t even know how to pronounce her […]
Descubre la inspiradora historia de Julieth, quien fue diagnosticada con displasia de cadera a temprana edad. Conoce sobre su tratamiento en Nemours Children’s Health y el impacto que tuvo en su vida.
Discover the inspiring story of Julieth, who was diagnosed with hip dysplasia at a young age. Learn about her treatment at Nemours Children’s Health and the impact it had on her life.
Experience the remarkable journey of Jeremiah, a baby with a rare genetic disorder, as his family finds hope and the best care at Nemours Children’s Hospital.
Witness the incredible journey of Connor, a 12-year-old boy with Arthrogryposis Multiplex Congenita, as he overcomes challenges, undergoes surgeries, and becomes an ambassador for Brace for the Race and Ninja Warrior Course.
Abigail is a 16-year-old girl who was diagnosed with scoliosis when she was in middle school. It was during her annual health visit when her spine caught the doctor’s attention. Abigail’s mother, Serena, took her daughter to see an orthopedic specialist at Nemours Children’s Health, Jacksonville, where they met with Dr. Kevin Neal and were told that Abigail had scoliosis. Initially, no further actions were taken as the scoliosis wasn’t severe. However, about a year had passed when Abigail started experiencing more pain and her posture worsened. So, they went back to Dr. Neal at Nemours Children’s and Abigail was put into a TLSO brace. The care team at Nemours played a vital role in Abigail’s treatment. “Mike, in particular, was fabulous,” says Serena. Michael Wright, Director of Prosthetics & Orthotics, ordered and fitted Abigail’s scoliosis brace. “He played his role perfectly, giving Abigail a sense of comfort throughout the […]
Natalie had always been an active teenager with a love for surfing, skiing, and running. She would often spend her weekends hitting the slopes or catching waves at the beach with her friends. Determined, Natalie worked hard to become the best athlete she could to achieve her goals. However, during a routine check-up at her pediatrician’s office, Natalie received some unexpected news. She had adolescent idiopathic scoliosis, a condition that causes the spine to curve. Her pediatrician referred her to Nemours Children’s Hospital, Delaware to meet with Dr. Suken Shah, a pediatric orthopedic surgeon. Despite the busy nature of the hospital, Natalie was treated with kindness, patience, and respect. Dr. Shah took the time to talk with her and understand her as a person, not just a patient with a medical condition. He mapped out a care plan for her scoliosis to get her back to her active lifestyle. At […]
Meet these Nemours Children’s patients from Orlando and Delaware with life-threatening diagnoses. Together with their families and the Nemours Federal Affairs Team, our young advocates will meet with members of Congress in Washington, D.C.
When Riley was born, she was diagnosed with a rare bone dysplasia that made her bones irregular in size and shape. As she grew, the dysplasia began to manifest itself in her spine, and she was diagnosed with congenital kyphoscoliosis at just one year old. For the next five years, Riley saw a specialist in Massachusetts and had to wear a brace for over 18 hours a day for six years. When Riley’s family moved to Pennsylvania for a new opportunity, they were referred to the amazing team at Nemours Children’s Hospital, Delaware. There, they met with Dr. William Mackenzie, who continued to provide Riley with the best care possible. As time went on, she had to undergo several casts, and implantation of magnetically controlled growing rods. This surgery, a complex procedure performed by both Dr Mackenzie and Dr. Suken Shah, pediatric orthopedic spinal surgeon, was successful to maintain the […]
Discover how Nemours Children’s Health brought together over 100 participants from 36 states to promote healthier childcare settings through outdoor learning environments and increased participation in the Child and Adult Care Food Program (CACFP) at their recent virtual convening.
Page 18 of 30