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When Callen was first diagnosed and needed heart surgery, his family faced one of the most frightening times of their lives. But through it all, Nemours Children’s Health stood by their side. “Looking back now, I am so grateful we were lucky enough to get him transported by air ambulance to Nemours Children’s,” Callen’s mother Amber shared. “It was a scary time for all of us, but they really did go above and beyond in every way possible to make sure my son received the best care. We wouldn’t have wanted to end up anywhere else.” Callen continues his care at the Nemours Children’s Pensacola, Florida, location every six months. Even though the family now lives in Alabama, they don’t hesitate to make the drive. “It’s still 100% worth it for the care he receives at Nemours Children’s,” Amber explained. From urgent surgeries to everyday follow-ups, the team has remained […]

Adopted from Colombia two years ago, Miguel’s congenital limb deformity had left him unable to stand or walk, relying on his knees and a wheelchair to navigate the world. “We were aware of his congenital limb deformity, but we weren’t exactly sure what that would mean for him in the course of his life,” his mother, Jennifer, shares. Life before treatment was a series of adaptations and challenges. Miguel had developed his own way of navigating the world. He would “walk” and crawl on his knees, using custom knee pads to cushion his movements. “He was amazingly active,” Jennifer shares, “but he did have frequent pain and skin issues from ‘walking’ on his knees.” His inability to stand or reach things independently made everyday activities a constant challenge. His family’s resolve to find a solution grew stronger with each passing day. “Because he also has shortened arms, we realized that […]

When Allison was 21 weeks pregnant, she and her husband, Chris, learned that their son, Jackson, would be born with diastrophic dysplasia, a form of dwarfism. After his birth and spending 37 days in the NICU at their local hospital near their home in Virginia, they began to see specialists for Jackson’s care. “Shortly after learning Jackson’s diagnosis, we connected online with another family whose son also has diastrophic dysplasia,” shares Allison. “They recommended we consult with the skeletal dysplasia team at Nemours Children’s. While Jackson was still in the NICU with feeding issues, we were in contact with Angie Duker, MS, CGC.” In May of 2016, when Jackson was just 3 months old, they made their first visit to Nemours Children’s Hospital, Delaware. “As diastrophic dysplasia is not as common as other types of skeletal dysplasia, we were looking to find care from medical professionals with specific and successful experience with the […]

Elliott’s journey with Nemours Children’s Health began when he was just 2 years old. On May 30, 2024, his family received the life-changing diagnosis of CLN2 disease. “We found out from genetic testing on May 30, 2024 I believe,” said his dad, Nathan. “I was assuming the school was under-feeding my son. I was upset at everyone until I figured out what was causing seizures.” At first, Elliott received his infusions at a different provider in Gainesville, Florida. Eventually, his care returned to Nemours Children’s when the hospital began offering Brineura®, the only FDA-approved treatment for CLN2. Nemours Children’s is the only pediatric hospital in Central Florida offering this life changing therapy. “People said to come here,” Nathan recalled. “The Nemours Children’s team has always been top notch. Very kind people here. Their teams seem to have much better resources and location for me. I’m forever indebted to the team. […]

At 17, elite soccer player, Anel, faced a daunting diagnosis of a torn acetabular labrum and femoroacetabular impingement (FAI), threatening his athletic dreams. For Anel, the first signs of trouble appeared during a significant growth spurt. “I initially had pain back in 2022 when I had a growth spurt and never thought anything of it,” Anel shares. Though he dismissed it, the pain persisted, and after months of intermittent issues, his athletic trainer at Jacksonville FC recommended he seek further medical attention. It was then that Anel was referred to Nemours Children’s Health, Jacksonville. When Anel started receiving treatment from Sports Medicine Director, Dr. Stephanie Pearce and Caitlin Schlosser, MHA, ATC, OTC, they quickly realized the severity of his condition. “They immediately found out the problem with an MRI scan, and we proceeded with a treatment plan,” Anel explains. The first approach was to try a less invasive method, a […]

Megan and Brian were overjoyed when they learned of their pregnancy with Emma. Like many expectant parents, they were filled with excitement and anticipation. However, their journey took an unexpected turn during a routine 24-week OB/GYN visit. Their doctor noticed that Emma’s growth had dropped significantly to the 3rd percentile, a development that immediately raised alarms. “It was recommended we see Maternal-Fetal Medicine specialists on account of the high-risk pregnancy,” share Megan and Brian. “After several more visits and an amniocentesis, we learned that Emma had achondroplasia, about one month before she arrived.” Achondroplasia is the most common skeletal dysplasia leading to disproportionate short stature. “We are both average height parents and do not have any family history of achondroplasia, so we did not know a great deal about the condition until we met our sweet Emma,” share Megan and Brian. In Emma’s case, her achondroplasia was caused by a […]