An interesting story as I have never heard of Apert Syndrome, a rare genetic disorder.
At 5 p.m., a geneticist from the Ann & Robert H. Lurie Children's Hospital of Chicago arrived and diagnosed Mary Cate with Apert syndrome — a rare disorder caused by an extra protein on one of her genes. The result is extra bones and cartilage, causing a misshapen skull and melded fingers and toes.
About 25 children are born with this craniofacial condition in the United States each year, Lynch said, adding that she struggled to find information about Apert syndrome after the diagnosis.
[,,,]
One or two families each month find Lynch through her blog and her corresponding Facebook page — Apert OWL. Often, the emails come from parents of children recently diagnosed with Apert syndrome and desperate for information.
[,,,]
Mary Cate has already had four surgeries. Children diagnosed with Apert syndrome can have upward of 60 surgeries throughout their lifetime, Lynch said.
Surgery on the skull is vital, as the brain will outgrow the malformed cranium. Without surgery, this can cause developmental delays, along with the loss of vision, hearing and fine motor skills. Mary Cate has already had one such surgery as well as two other procedures that separated her fingers and toes.
[,,,]
Before Mary Cate's visits, Lynch recommends students read "Wonder" by R.J. Palacio. This New York Times best-seller details the life of August Pullman, a boy born with a facial deformity. It's told from his perspective, as well as the perspective of classmates, his sister, her boyfriend and others.
After the students read the book, Mary Cate joins the classroom for a discussion. Her presence brings to life the discourse on things like bullying and what it means to look different. Mary Cate's introduction often comes just as preteens begin to feel self-absorbed and even act unwelcoming toward others, Lynch said.
'My Mary Cate' Showing Schoolchildren What Different Looks Like - Beverly - DNAinfo.com Chicago
No comments:
Post a Comment