“I felt like there was no-one else out there”
Claire got involved with The Fragile X Society when she had questions she felt no one else could answer. A leaflet about our services was given to her by the geneticist who diagnosed her - she remembers feeling relief that there was someone out there who knew what to say and give her guidance.
“Knowing my son was going to be born with a condition that no-one seemed to be able to tell me about was awful. I hated my pregnancy the whole way through”.
The impact of Fragile X Syndrome is more prominent in males than in females – boys are often born with mild to severe learning disabilities, exhibit autistic-like behaviour, struggle to develop language and communication skills, and are unlikely to lead fully independent lives.
“At 9 weeks pregnant I had a blood test done to see if I was carrying a boy. Of course, it was a boy, and I was told I could terminate. No one could tell us how affected he might be. The genetics clinic had no answers, the doctors had no answers, I felt so alone and it was awful”.
Claire decided to continue with her pregnancy, and gave birth to son Shay. Our Families and Professionals Advisor for Children has since helped Claire with a variety of issues ranging from toilet training, to special needs schooling.
“All my questions are answered without being made to feel silly. The Society gets us as parents, they are helpful and friendly. It seems like nothing is too much trouble. I carry their awareness cards in my handbag and give those to people – I encourage people to learn about Fragile X. Shay and I have been to 2 of the Society’s conferences in Birmingham, which have been so informative.
Without you, I’d be in a heap on the floor!”