By Heather Shortt
My son Grayson was diagnosed with Fragile X Syndrome when he was 7 months old. His pediatrician, who is absolutely the most amazing doctor, noticed that he was mildly delayed. She said that she wanted to run some blood tests just to see if there was a cause to the delay. One of the first tests was the Fragile X test, and it came back that he did have the disorder. When I first got the news I was devastated! All the dreams you once had for your child just seem to be Early intervention therapies
have helped him tremendously!washed down the drain, and it was done so in a matter of seconds. Grayson is now two and although he may be delayed in a lot of areas, he does wonderful in others. Early intervention therapies have helped him tremendously! He LOVES music, being outside, and ELMO!
Now when I think about Fragile X, it’s not so scary anymore. I have come to know many other parents in the FX world and can tell you that they have been an amazing support system to me. I don’t know what Grayson will be like in 10 years, but I don’t think I really care. He is my son that means everything in this world to me. He’s PERFECT and I would never change anything about him. Sometimes people ask me if I had the choice, would I change the fact that he has Fragile X. My answer is NO! Although it does make things more difficult sometimes, the good things that I get from this little boy far outweigh any of the bad. Now I realize that my dreams for him never went down the drain, they just changed a little bit. And that’s okay too, because they are better now. When something is accomplished or a goal is reached, it means more to us parents no matter how small it is. Everyone of you who have come into my life are true blessings!
he will just as fantastic in ten years as he is now! (love his T)
Hi,
Thank you for sharing your story. Your son is beautiful! We are waiting for results from genetic testing and it is possible that my son may have it also. Thanks for your inspiration.
Amanda
My son Ted was diagnosed Dec 2010. He turned 3 in Oct. He is now starting to use a few words. I’m so worried about him not being able to talk as he gets older. Also we are waiting for an appointment to have his feet corrected as he walks on his toes. We had a new son 6 weeks ago called Matthew I’m not getting him tested at this point
Love his smile and his t-shirt! My son Justin is now 16 and we thought for sure he was deaf and had him tested when he was about 2 years old because he just didn’t talk! At that point, we had no idea that he had fragile x. Now Justin talks from the minute he wakes up early in the morning until the end of the day when he collapses into bed. Hold on tight to him…they grow so quickly. I have learned so much from Justin and would never change any of it…Lisa
I just loved reading about Grayson. He looks so happy and you as his mama have the right attitude. You will make the best of each day and appreciate all of his incredible achievements. Thank you for sharing your story. This comes from another mama of a boy with fragile x syndrome (Philip just turned four). God Bless!