ARTICLES RELATED TO:
Dwarfism Awareness Month

For the White family, life has been full of unexpected challenges—but also extraordinary resilience and hope. Three of Seth and Hannah’s children, Samuel, Selah, and Stephen, were all diagnosed with Ellis-Van Creveld Syndrome (EVC), a type of skeletal dysplasia that restricts cartilage and bone growth and is often accompanied by congenital heart defects. Their journey, which began with the birth of their first son, Samuel, has led them across the country to Nemours Children’s Hospital, Delaware, where they found the care they needed for their children’s complex condition. The family’s story begins in Arkansas, where Samuel, now 6, was born. Hannah remembers the uncertainty surrounding Samuel’s diagnosis. “At our 20-week ultrasound, we learned that Samuel had some complex medical concerns, but even after a lot of testing, they weren’t sure of his exact diagnoses,” she said. It wasn’t until after Samuel’s birth that the family learned he had EVC, along […]

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 […]

From the very beginning, Sophia’s life has been intertwined with achondroplasia dwarfism. Diagnosed at birth, she started her medical journey under the care of Dr. William Mackenzie and Colleen Ditro, two dedicated clinicians at Nemours Children’s Hospital, Delaware who have been by her side since day one. Born and raised in Colorado, Sophia was introduced to Nemours Children’s through LPA (Little People of America). Here, she first met Dr. Mackenzie and Colleen and they have followed her since birth, connecting yearly at LPA conventions. As she grew older, Sophia continually defied expectations, becoming a professional athlete and earning medals in two Paralympic games as an elite swimmer. When she retired from professional sports and began exploring new avenues, Sophia took up running. However, she began to encounter some hip issues along the way. This led her to seek medical advice from Colleen who recommended Sophia come to Delaware and see Dr. […]