Our Story...

Hello all,

   So here's a little of our back-story just to get you up-to-date. My husband James and I have been together for almost 6 years. During those years we have been through more trials and tribulations that we ever thought we were going to. We have one son, who was diagnosed with Fragile X syndrome when he was about a year and a half old (he'll be four this summer), and we have a new little bundle of joy, a daughter, who is four months old.

   Our son's diagnosis came as a huge surprise, but then again, I guess it does for most families. My son was around six months old when we realized that he was developing at a slower rate than other kids his age. I understand that all kids develope at a different rate, and kids will do things when they're ready, on the their own schedule, but as a mom, you just know when something's not right. My fears were confirmed when I went into his room one day (he was around a year old) and his vocabulary of around fifty words, all of a sudden went down to nothing. He just didn't talk. Nothing.

  After visits to our family doctor and a referal to a wonderful pediatrician, Jonathan had his blood tested for Fragile X (something I had never heard of before). After learning that the blood work had come back positive for Fragile X, and that I had been the one to give it to him, I went home and the first thing I did was google Fragile X. (Where would we be without google?)

   I came across this WONDERFUL website, with oodles and oodles of information, everything I would ever want to know about this disorder. That was the National Fragile X Foundation. ( www.fragilex.org ) They sent me pamplets, and newsletters, and all kinds of information and referals.

   We were also told about this wonderful facility that was an early intervention program for children with special needs. They set him up with a speach pathologist, physical therapist, and occupational therapist.

  We go through one day at a time, some are good, some aren't as good, but we get through. My family has proven to be stronger than I ever imagined they would have to be.