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Nemours

Micah’s journey began with some unexpected twists and turns, before he even entered this world. “Before Micah was born, we received the news that he might have Down syndrome through routine blood work during pregnancy,” shares his mother, Kaitlyn. “It was a whirlwind of emotions, but we leaned on the support and expertise of Nemours from the very beginning.” Kaitlyn’s family have been seeing providers at Nemours Children’s throughout the Delaware Valley ever since her firstborn arrived prematurely. Her GYN office recommended Nemours Children’s, and they found the care to be exceptional, so they continued with Micah’s treatment there. It was his team at Nemours that diagnosed Micah with Trisomy 21, commonly known as Down syndrome, along with clubfoot and a cardiac concern – coarctation of the aorta. Nemours became their beacon of hope, with a multidisciplinary team ready to address Micah’s complex needs. From the Trisomy 21 Clinic to […]

Joshua’s story begins with his 20-week anatomy scan, which revealed signs of a lower urinary tract obstruction. Born with underdeveloped and cystic kidneys, he was diagnosed with chronic kidney disease. Holly, Joshua’s mother, recalls, “We were told before his birth that if he survived, he would need dialysis to bridge him to a kidney transplant.” “Joshua’s condition has been difficult since birth,” shares Holly. “He had frequent labs, appointments, hospitalizations, and dialysis. His treatments have always been a bridge to transplant. He was medically fragile which impacted the entire family. We have spent much of his life isolating and with limited activity. Despite all this, we know that God is good and we have relied on our faith to help us through the difficult years.” A pivotal moment in Joshua’s journey came when Nemours Children’s Health entered their lives. Recommended by their local medical team, Joshua’s family transitioned to care […]

When Julieta was just 1 month old, she was diagnosed with Spinal Muscular Atrophy type 1 (SMA Type 1). SMA is a rare genetic condition that causes muscle weakness and atrophy, significantly impacting Julieta’s ability to walk, sit up, and control her head movements. It also affected her ability to speak and eat. Julieta’s mother, Melissa, recalls the initial shock and heartbreak that accompanied the diagnosis: “After I got the call with her results, I was told by five neurologists that she was not going to make it past 1 year of age. Obviously, this put me in a sad and grieving mental state. We as a family were devastated.” Shortly after receiving her diagnosis, Julieta was referred to Nemours Children’s Hospital, Florida by a neurologist in Miami. “After I visited Nemours and felt finally safe and with big hopes for my daughter, I went back to Dr. Miller in […]

Riley’s diagnosis with cerebral palsy became apparent when her family noticed she wasn’t hitting the typical milestones. “I was not walking at 18 months old,” she recalls. “It was recommended that I have an evaluation by PT and OT specialists after seeing my pediatrician,” leading to her diagnosis of cerebral palsy shortly after. Prior to treatment at Nemours Children’s Hospital, Delaware, Riley faced the challenges of cerebral palsy. “I had very big bunions on both feet, which made walking and running long distances very painful,” she shares. “I had a very limited range of motion due to my CP, that made running, walking, and swimming difficult on my muscles. I couldn’t wear a lot of shoes, like sandals and flats.” However, Riley’s life took a turn for the better when she discovered Nemours Children’s in Wilmington, Delaware through the recommendations of peers who had undergone similar journeys. “My family found […]

Brody’s journey with Nemours Children’s began before he was even born. During a routine anatomy scan, Beth and her husband learned that one of their twins, Brody, would be born with a cleft lip and possibly a cleft palate. “I was pregnant with twins through IVF and was sent to Nemours Fetal Care,” shares Beth. “After finding out about Brody’s diagnosis, we did a lot of research and compared to teams in Tampa. After a facetime with Dr. Kellogg to ask him questions, we knew we found Brody’s doctor and team.” Upon Brody’s birth, he encountered difficulties due to his cleft lip and palate. “Prior to surgical intervention, Brody struggled with feedings; milk would come out his nose, he drooled a lot, and I don’t think he was able to hear well,” Beth shared. These challenges emphasized the need for specialized care, which they found at Nemours Children’s Hospital, Florida. […]

For elite gymnast Maddy, the journey to greatness wasn’t without its hurdles. But with determination and the expert care at Nemours Children’s Health, Maddy is back on her feet, ready to conquer the mat once again. Maddy’s athletic career took an unexpected turn on January 25, 2023, during a routine practice session at Temple University. A gymnast on the collegiate team, she faced a setback that would challenge her both physically and mentally—a ruptured Achilles tendon. Before receiving treatment at Nemours Children’s, Maddy experienced the full weight of her injury. “I was unable to walk, move my foot in any direction, and do everyday activities like go to class,” she recalls. “I was also in an abundance of pain every day that led to many mental breakdowns.” Having received treatment from Nemours Children’s Health, Jacksonville for years growing up, she knew she would get exceptional care for her new injury. […]