Families with Apert syndrome find similarities, not differences

Madilynn and her father Rocky For some families in the waiting room on the day of the Apert syndrome clinic, it’s a reunion. For others, it’s a revelation. Coming to Boston Children’s Hospital from as far away as China, some have never met another child with Apert syndrome. Before long, parents and kids of all ages and ethnicities are taking group selfies as the younger children run around and play. “These kids have the brightest smiles, they’re very resilient,” says Tambra Milot, mother of 3-year-old Madilynn. Each year, the clinic sees about 50 children with Apert syndrome, a rare genetic disorder in which the skull, face, hands and feet develop abnormally. The clinic is held at least twice a month, bringing together the specialists each child needs to see. Today, families are also here for the weekend, to exchange information and learn about the latest research at Boston Children’s 2016 Apert Family Symposium. Cameron Elliott, age 6, from North Carolina, is also here for surgery. His operation, called a fronto-orbital advancement, will move his forehead and brow rim forward. This will provide more protection for his eyes, which are prominent in children with Apert syndrome. For Cameron, the operation can’t come soon enough. “In February, Cameron fell, hit his eye and ruptured his eyeball,” says his mother Jessica. “His retina detached, and he’s now blind in that eye. It was incredibly traumatizing...
Source: Thrive, Children's Hospital Boston - Category: Pediatrics Authors: Tags: Our Patients’ Stories apert syndrome Cleft and Craniofacial Center craniosynostosis Department of Plastic and Oral Surgery Dr. Amir Taghinia Dr. Brian Labow Dr. John Meara Dr. Mark Proctor Dr. Richard Bruun sleep apnea Source Type: news

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