Archive for apert syndrome
Sonny’s story: How an online Apert syndrome community set one family on a path to Boston
Sonny Daniel has had a busy summer. Between traveling, camp, and time with family and friends, this 4-year-old has constantly been on the go — something his parents, Kellie and Josh, are incredibly grateful for. Their gratitude stems a lot from seeing how far Sonny’s come in his journey with Apert syndrome, a genetic disorder that ... Read More
Maisie’s story: Our journey with Apert syndrome
Our daughter Maisie is 4 years old. She loves riding her bike, baking, jumping on the trampoline, and keeping up with her older sister, Eliza. She’s also especially skilled at peeling hard boiled eggs. We learned prenatally at 18 weeks that something was going on with Maisie’s development. My doctors suspected craniosynostosis, a condition where the ... Read More
Minimally invasive surgery safe and effective for craniosynostosis
Traditional treatment for children with craniosynostosis — a condition in which the bones of the skull grow together too early in the child’s development — usually involves an extensive open craniectomy surgery with a incision to release the fused bones. But a study from physicians in the Cleft and Craniofacial Center at Boston Children’s Hospital ... Read More