In 2010 we attended a retreat for families of children who have hemiplegia. It was sponsored by CHASA, Childrens Hemiplegia and Stroke Association, a lifeline for us when Byron was first diagnosed. Over 500 people descended on a town in Alabama for the four day conference. 100+ kids and teens with Hemiplegia, caused by stroke, attended. Byron was three so it was mostly interesting for Bob and I. There were lectures, chances to meet successful teens who had developed excellent strategies for school and college, and it was great to chat with other parents dealing with the same issues we were. We always said we wanted to go again. And this year we want to go for Byron.
We think it will be great for Byron to see so many children who are just like him. They also have a sub group of children who have hemiplegia and hemispherectomy so he will meet other superheroes just like himself! This year they expect "hundreds" of kids, teens and adults with hemiplegia.
The retreat is from July 8-11 in Denton Texas which is outside of Dallas. Ahh July in Dallas - but they will have a pool :)
Byron Pratt, age 11, has Cerebral Palsy (Right Hemiplegia) caused by a stroke before birth. In 2015 he developed seizures and a rare form of Epilepsy called ESES, neither of which responded to treatment with medications. On November 3, 2017 he had a Functional Hemispherectomy. He has had many other major procedures in his short life including surgery for exotropia in both eyes, tonsils and adenoids removal, Selective Dorsal Rhizotomy (SDR), Constraint Therapy, and heel cord lengthening. The recent posts are about the Hemispherectomy and what follows. Older posts about other procedures can be found earlier in the blog or by links in the sidebar.