Lucas turned 21 this year, a fun milestone for most young adults, but not as eventful for someone with Fragile X syndrome. Lucas still prefers isolation in his room, fast-forwarding and rewinding to his favorite spots in his DVD collection, doing the same for YouTube videos on the internet, and his favorite internet pastime: shopping for die-cast toy cars and trucks.
This is the tolerable part of Lucas’ disease. One of the many things making us all crazy this year is his insistence on dining out. Food makes his world go-round, and when Lucas doesn’t get to eat out at his favorite restaurants, none of us are happy. This may sound minuscule and trite, but to Lucas, it’s the thing he looks forward to the most.
The other biggie is his obsession over a “perfect” toy. Lucas does chores around the house in order to save money to buy his favorite truck. When it arrives, he inspects it and inevitably finds some minute flaw, undetectable to most of us, but unacceptable for his Autistic standards. The toy will find its way to the donation pile with Lucas in tears asking for another one. Meanwhile, Dad has become an expert at repairing minor defects.
It’s hard to see such a sweet young man reduced to tears over something so simple, but he just can’t control his emotions over this and many situations which he (or we) just can’t control. And so another year flies by, and we have to ask for your continued and renewed support for the amazing things that FRAXA, and ONLY FRAXA, is doing to cure this disease.
There is exciting research focused on using medications that are currently available, in new combinations and doses that could produce positive outcomes and reduce the symptoms of Fragile X. There are also fascinating brand new studies that FRAXA Research Foundation has funded involving CRISPR gene editing tools and other exciting techniques.
We know you are inundated with philanthropy requests at this time of year, but this is your chance to change the world by helping us to cure a disease that few know of, and even fewer are working to fix.
Because you have touched our lives in some way, shape or form, and are part of the network that bonds us together.
You absolutely cannot offend us by making a donation that is too small. Every dollar helps, and we sincerely appreciate your consideration.
Because let’s face it. As soon as you stop reading this note, the odds of you donating go down significantly, and so does our chance for effective treatments and a cure for Fragile X.
Lastly, thank you for reading this letter, for your consideration, and for your love and friendship for people like Lucas who direly need your help for a cure.
~ Dean, Stefanie, Courtney, and Sydney Clark