BENEFITING: National Fragile X Foundation
EVENT DATE: Sep 21, 2013
For the third year, we are coming to our family and friends to help us with a charitable contribution in conjunction with the Walk for the Faces of Fragile X here in Kansas on September 21, 2013. You just cannot imagine how much it means to this family when you either contribute and/or join us on the day of the walk. Thank you for giving to help with this sometimes daunting journey we have found ourselves immersed in for the past 19 years. Much of those years, we were alone with the challenges that Fragile X added to our life. Now, with the formation of the Kansas Fragile X LINKS Group, an affiliate of the National Fragile X Foundation, we are not alone. We have benefited beyond measure by your past support, and we're hoping you'll consider helping us again. Each fall, we will come to you without fail through this fund raising event, and we're hoping you will put us in your budget for an annual charitable contribution. If a cure for Fragile X is found during Josh's lifetime, we will stop asking. We promise!
Most of you know about Fragile X. Those who are unfamiliar with it can find lots of information at fragilex.org or FRAXA.org. In simple terms, Fragile X Syndrome is the leading inherited cause of mental impairment, and the leading known genetic cause of Autism. For Josh it has meant severe cognitive impairment, sensory processing disorder, autistic spectrum disorder, delayed and limited speech, aggressive behaviors during his early years, paralyzing anxiety, mild seizures, low muscle tone, minimal fine motor skills and challenged gross motor skills. It would be hard for anyone to imagine how the severity of his multiple disabilities has impacted our family through the years. To say that we are grateful for your support is so inadequate. You have made a difference in how we view and live our life with Josh. He is a blessing. He is remarkable. He is loved. Thank you for loving him with us.
My 1st blog:
Beautiful video with the analogy - Planned to go to Italy (have a happy, healthy child); but landed in Holland (had a handicapped child instead, but beautiful just the same);
Click on the arrows under Josh's photo to view more pictures. OXOX