I am a carrier of a gene that caused my son to have Fragile X Syndrome and Autism. I did not know I carried this gene on one of my X chromosomes (FYI, 1 in every 129 women carry it!) until it multiplied when I passed it to Josh and he was diagnosed with Fragile X Syndrome. Our life changed instantly. For many years we struggled alone and in isolation because it was often difficult for Josh to be out in public without self-injurous behaviors or lashing out at others. We've come a long way, baby. Our journey has not been easy, but it has been a blessing. Everyday is a challenge, but everyday is a celebration. We've learned so much about life through Josh. Mostly, he has taught us with every tiny little milestone that there is hope.
Hope is why I co-founded with four others the Kansas Fragile X LINKS Group.....for support with people who are on the same journey, and so that others challenged by Fragile X won't feel alone and will have access to information and tools to help them through the struggles. We are not an easily funded charity, because we are not as well known as other things like Down Syndrome, Cystic Fybrosis, Breast Cancer to name a few. That is why I have to depend on my community to help, and we have to continue having this walk each year and raise awareness to help Josh and me and so many others like us.
Hope is in the air with research and drug trials to find successful treatments and possibly even a cure in Josh's lifetime. That would be such a blessing, to know as we're aging and become unable to care for him that he may not need us because he can care for himself. Funding for research is critical to keep moving toward this possibility while the momentum and findings are so promising.
Hope has been generously given for the past two years by our friends, our family, other FX friends, friends of friends, Mike's co-workers, Josh's schools and service providers. We are so fortunate to be a close family surrounded by good people who love Josh. Thank you to those who have given and who plan to give. For me, there is no greater feeling than to know we are surrounded by people who care.
If you can help us meet our goal again this year, please click on "Donate." If you can join us at the walk, click on the link below and then on "Join Now." Be sure to join Team Joshman when you are given that option during the registration process. If you would like a t-shirt but can't be at the walk, you may simply register and we will mail the shirt after the walk. Thank you from the bottom of my heart for all of your support -- past, present and future.
Click here to register and join Team Joshman!
If you would like to read more about our family and life with Josh, you may do so on this link to my blog:
At the 2nd Annual Walk for the Faces of Fragile X, there will be entertainment and food and a silent auction (bring your checkbook and do some holiday shopping). It is a super fun family day, and we can't wait!
If anyone has something they would like to donate for the auction, (or if you have any questions) please email me at firstname.lastname@example.org
(Event is Saturday, October 6, 2012 at Shawnee Mission Park, Shelter No. 2, from 9:00 am until Noon)