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Nemours Children’s Health, Delaware Valley

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 […]

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 […]

When Andrew, now 28, reflects on his journey with Nemours Children’s Health, he describes it as nothing short of miraculous. Diagnosed with hepatoblastoma that had metastasized to his lungs and brain as a child, Andrew’s journey to recovery has been thanks to his expert medical care and unwavering support system. In November 1999, 3-year-old Andrew woke up in the middle of the night complaining of shoulder and abdomen pain. His parents, concerned, took him to the pediatrician in Augusta, Georgia, where appendicitis was initially suspected, and surgery scheduled. However, a perceptive surgeon, recalling a rare medical condition from his studies, insisted on further tests. The results were alarming: Andrew’s cancer markers were sky-high, pointing to a serious diagnosis. The local medical team quickly realized they needed specialized help, so he was transferred to a children’s hospital. The surgeons there reached out to Dr. Adela Casas-Melley, who was working at Nemours […]

Alek is a courageous patient whose journey with severe kyphoscoliosis led him across the globe to Nemours Children’s Hospital, Delaware. Kyphoscoliosis is a dangerous condition that affects the spine. It causes an abnormal curve in two directions, side to side and front to back. It is a combination of two other conditions: kyphosis, which causes a severely rounded appearance of the back, and scoliosis, where the vertebrae form a curvature instead of being straight. Alek’s diagnosis unfolded in Poland in 2010 when he was a young boy. The road ahead seemed daunting as his condition gradually worsened. “Before starting treatment at Nemours Children’s, Aleksander’s condition was very bad,” shares his family. “He had trouble with breathing and couldn’t eat and walk. He lived in chronic pain.” It wasn’t until after a failed operation in Poland that Alek’s family discovered Nemours Children’s. Referred by their physician in Poland, Alek and his […]

On this Arthrogryposis Multiplex Congenita (AMC) Awareness Day, we shine a spotlight on two remarkable women, Ewa and Sara, whose journeys with AMC have inspired countless individuals. Ewa’s journey with Nemours Children’s Health began in 1986 when she traveled from Poland to receive treatment for AMC, a rare condition affecting 1 in 3,000 births. Nemours became her second home, offering life-saving care and support from a dedicated team of doctors and therapists. “Nemours, along with my family, truly shaped me into the person I am today,” Ewa shares. Her gratitude for the care she received has fueled her commitment to give back through various fundraising initiatives, including Nemours Radiothon, Brace for the Race, and an annual toy drive. In her latest endeavor, Ewa organized a book fundraiser for another Arthrogryposis patient and author, Sara Gaver. For every book donated, Ewa matched the donation, resulting in a collection of 110 copies […]