BENEFITING: National Fragile X Foundation
EVENT DATE: Sep 21, 2013
Ryan is an amazing ten year old boy who has a passion for swimming, playing drums, waterfalls and going to car washes. He enjoys going to the store, pretending to be Uncle Floville, anything that has to do with Halloween and watching the Big Bang Theory. He always knows what quote to say at the right time to make everyone laugh and smile. He loves his friends at school, his dog Sophie and being with his family, especially his father.
Ryan also has Fragile X Syndrome which causes him to face many challenges every day. Because of FXS, he has high anxiety, language delay, sensory issues and sometimes aggression. This year, he entered a very promising drug trial that brought so many amazing things to his life. His anxiety lowered, his language grew, and his frustration level was little to none which caused very little aggression in his life. He was just all around happier and more content than ever. Sadly, this trial ended taking him back to the place that he was before. We have always known that he has so much more in him but when we actually got to see it, what his life could be, brings so much hope to what the future holds.
Please join us to help raise awareness for our 3rd Annual Walk for the Faces of Fragile X on September 21st at Shawnee Mission Park Shelter #2. You can join our walk team “Rally for Ryan” by clicking on The Team tab, then Join My Team to register for the event. If you are not able to come walk with us but would like to make a donation on-line, please click on Donate to this Fundraiser.
THANK YOU so much to all of our family and friends that have given us such amazing support thru the years!
Jay and Brooke