My greatest reward from my journey with 2 boys ( Matthew is 14 and Benjamin is 8 ) with Fragile X is that my mantra has become “There’s nothing we can’t do!”
Since Matthew’s diagnosis in 1999 at age 2.5, we have been able to trace it through 3 generations of Fragile X… puzzle pieces that finally all made sense. We have a slew of affected relatives, some carriers, some affected, some affected with FX and Autism… we have young children and older adults with it in our extended family.
Having unknowingly grown up around FX, I knew that it was up to me to make the We are stronger than we
ever knew we could be.most of this journey once I had children of my own that are affected. We continually push our boys to be all that they can. It’s often the harder choice, but there is no other option. It took many years, many different ideas, continual fast thinking and never giving up, to get where we are today. We are stronger than we ever knew we could be.
These boys are remarkable. They have each reached so far in such a short time. Matthew recently made the honor roll for the final marking period of his 7th grade year. As a result, anyone he told rewarded him with some money,and he’s about 75% on his way to saving for his very own iPad. He is a sensitive, thoughtful and charming handsome young man.
Benjamin made his 1st Communion in May 2011, and danced and partied like a “Rockstar” until late at night with a DJ, dancers, and 125 of our closest family and friends, he had the time of his life. He is a social, happy, very funny little boy. He’s cute too!
Fragile X Association of NJ