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Patient Stories

In 2019, while pregnant with my second son, we learned that he would be born with dwarfism. Though both my husband and I are on the short side of average height, we did not have a lot of experience with dwarfism and were unsure of how that would impact our son’s quality of life. We did what all parents would do and learned as much as we could about dwarfism and connected with other families. In June of 2019, Lincoln was born 12 weeks early due to other pregnancy complications. His dwarfism diagnosis became an afterthought, and the focus became getting him to eat and breathe on his own as we struggled through an extended NICU stay. After being released from the NICU, Lincoln was followed by a local pediatrician and medical team, but after having a short-term episode of paralysis at 2 years old, they referred us to Nemours […]

Meaghan remembers the early days of her daughter Addison’s life vividly. Diagnosed with a cleft palate just days after birth, Addison’s journey began with a challenge. “She was having a very difficult time breastfeeding and just didn’t seem interested in eating,” recalls Meaghan. Suspecting a possible lip tie, she asked a nurse to check Addison’s mouth. Instead, the nurse discovered a cleft palate. From that moment, Meaghan began the process of feeding Addison using a bottle with a valve. The cleft palate diagnosis impacted the Addison’s family’s daily routine significantly. With a 3-year-old son already keeping them busy, adjusting to Addison’s needs meant slowing down their usually fast-paced days. “In the very beginning, it would take about 45 minutes to an hour for one feeding,” says Meaghan. “With Addison struggling to eat, we had to take each day at a time.” However, with perseverance and patience, Addison began to improve […]

Grayson’s leukemia diagnosis at age 2 brought immense challenges, but with the support of Nemours Children’s Hospital, his family remains hopeful and resilient.

Zander, an aspiring college football player, first crossed paths with Nemours Children’s Health after suffering a game-related injury. As luck would have it, Dr. Julia Fink, Nemours’ orthopedic specialist, was the team doctor on the field. After the game, Dr. Fink brought him in for an X-ray and MRI, setting the course for his recovery. The injury turned out to be an acromioclavicular joint separation (AC joint separation), which worsened during the state football championship game. Zander’s team went on to win the game, but his shoulder pain lingered, especially with throwing, even after physical therapy. To resolve the issue, Dr. Fink performed an AC joint reconstruction. Following surgery, Zander was in a sling for six weeks and underwent three months of physical therapy. By May, he was able to start his throwing program, and by August, he was ready to kick off the football season, stronger than ever. From […]

The blog shares Karina’s journey as a 4-year-old battling acute myeloid leukemia with the support of her family and Nemours Children’s Hospital.

10-year-old Kieva has faced many challenges in her young life. At the age of 3, she was diagnosed with bilateral vesicoureteral reflux (VUR), a condition that brought frequent UTIs and fevers. Kieva’s journey with VUR began after a series of high fevers and recurring UTIs left her parents, Tara and Tim, searching for answers. “The constant worry about whether a fever was another UTI and the potential damage being done to Kieva was overwhelming,” shares Tara, Kieva’s mom. “Each instance left us questioning if we had sought medical help in time and how this condition might impact her future.” Kieva’s condition led them to Nemours Children’s Hospital, Delaware, where they found the care and support they needed. Referred by Kieva’s primary care doctors at Nemours Children’s Health, Media, the family met with Dr. Figueroa, who quickly became a pillar of Kieva’s care. From the very first visit, Tara knew they […]