Patrick, 19 non verbal, affected, full mutation with sister, Kelley, 17, full mutation at the beach last summer.

This picture involves one of Patrick’s favorite things to do with his family. We go to Cape Cod every summer, Pat especially loves going to the beach and if possible returning every rock that is on the beach to the sea. He loves the waves and could watch them for a long time also the sand; sitting in it, dumping and filling it, building with it and adding water to it.

Patrick is in a vocational high school program trying out different “jobs” to see what “work” is like and what he likes to do. As most affected by Fragile X he loves routine and doing some tasks over and over. We are heavy into the transition stage from school to adult life and it can be scarey and overwhelming.

While our other teenager, Kelley, is looking at colleges (making sure supports are available there if she needs them) and getting ready to start her senior year in the fall. Kelley is a great sister to Kelley is a great sister to
Patrick and she is very
proactive in her future plans.
Patrick and she is very proactive in her future plans. She works part time at a local retail store, plays softball for her high school and will be receiving her Gold Award from Girl Scouts in June. Her project was to bring the “Spread the Word to End the Word” program to her high school; she organized speakers and a banner for all students to sign not to use the “R-word”, retarded. During this project we saw her grow and experience new responsibilities and succeed!

To learn more about Kelley’s “Spread the Word to End the Word” project, please visit