- Fragile X-associated Disorders
- Treatment & Intervention
- Public Policy & Legislative Advocacy
- Support the NFXF
By Holly Roos
In the spring of 2003, Parker (then 3 1/2) & Allison (7 mo) were diagnosed with Fragile X. In many ways, the diagnoses greatly changed who we are. We went from a family who had never heard of FX to a family who is very active in advocacy, support, education, awareness and fundraising for FX. The thing that hasn’t changed is how incredible our children are!
Parker, now 12 is moderately affected. He loves school and his teachers love his sense of humor and compassion for everyone around him. He is in Special Olympics where he is on the basketball and the Track & Field team. He also loves to swim! This summer we signed Parker up for swim lessons and in just a couple weeks he’s already swimming in the deep end and his teacher’s goal is to have him diving by the end of summer! He has a “don’t give up” attitude, you will often hear him say, “Never give up!” We are very impressed with how far he has come and excited for what his future holds.
Allison, now 8, is mildly affected. You will often find her singing (often making up new songs!) or writing a story. She also loves to make people laugh and comfort anyone in need. Allison has helped me teach her classmates about her need for a “wiggle seat” and slant board, along with answer We didn’t stop believing in
our children or what they
could accomplish with
this diagnosis.questions about her brother. It’s been very empowering for her to be able to answer these questions and explain how life is for her. Allison is active in Girl Scouts, basketball, and softball. She has the most incredible imagination and from that the best solutions to problems are found! She never ceases to amaze us!
We didn’t stop believing in our children or what they could accomplish with this diagnosis. Although our plans for their future has been modified, the outcome is still the same. We want them to be happy, productive members of society. And this, I promise you, they will be.
As Parker would say, “Never give up!”