“You ring the helpline and you feel like you are part of a big family”.
Helen has 3 children who were all diagnosed with Fragile X Syndrome in 1998. At this time, there was very little known about fragile X, which made understanding the strengths and challenges of the condition difficult.
“I wince back to when I think about when we had the diagnosis. I really struggled in the early years, so to think the Society is there for families who have just had a diagnosis is good to know. You really need the support for life”.
It took Helen a couple of years to come to terms with her children’s diagnosis. However, as the years have gone by she feels both herself and her husband have become more confident.
Having been a part of our family membership for 18 years, they have used a variety of our services including: our free helpline to discuss various forms and receive general advice through our support workers; received our information leaflets, which they have distributed to schools and after school clubs; and attended our fragile X conference’s, through which they accessed useful information relevant to their children as they were growing up.
“Although my children – now adults! – still have multiple challenges, they are all very happy, very loving, and we would never be without them”.