“Once your child has been diagnosed with Fragile X syndrome, you may look at him or her and only see Fragile X syndrome. That’s normal – but please try to remember that your child is the same person as before the diagnosis. He or she doesn’t know that this diagnosis has come all of a sudden.
Don’t try to absorb everything at once. Over the days and weeks that follow, you will begin to understand what the diagnosis means for your child and the rest of your family.
Fragile X syndrome can be overwhelming, especially if you know little about the syndrome. Please remember that you are not alone:
- Check with your closest Children’s Hospital for local resources
- You can connect with Fragile X communities online
- Visit FXFC “You Are Not Alone” page for thoughts that others have found helped them on their fragile-x journey