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Our Story, and how the Society has helped us.

A mother writes about her daughter’s journey from childhood diagnosis, through school and college and into adult life and employment, and the part The Fragile X Society has played in helping her family navigate some elements of it.

“We adopted our daughter when she was one. We knew she had learning difficulties although they hadn’t been diagnosed. Her development was considerably delayed and she was eventually seen by a community health doctor who requested a number of tests in the hope of finding a diagnosis. The last test that was given was for fragile X and it showed she had the full mutation of the gene. It had been a stressful couple of years and in a way it was a relief that, now aged three, she finally had a diagnosis and we could gradually understand her needs and limitations and how to best help her.

In 1989 when our daughter was diagnosed there was very little awareness of fragile X. A consultant told us about the Society and we became family members. We were very grateful for the information the Society could provide us with. This information was also very useful when she went to mainstream school in helping the teachers to meet her needs, and when she went to college.

At nineteen she obtained work experience in in a pre-school for a few years. For the past nine years she has worked three days a week in a nursery where the staff are understanding of her limitations and supportive of her. She’s now thirty-two and as our daughter has got older she has benefitted from understanding what the syndrome means for her.

On a few occasions we have called the Society’s helpline and been able to ask questions that concerned us. We look forward to receiving the newsletters and research reports which are very helpful to read. We’ve attended Society conferences where we have benefitted from the many talks, as well as meeting the staff and other family members which our daughter has especially enjoyed. Our daughter has been involved in research programmes locally and in Edinburgh and London.

In 2016 we contacted a Families and Professionals Advisor on the Society’s helpline when our daughter’s Employment and Support Allowance (ESA) was stopped. It was a relief to be able to talk it through on the phone, and with the helpline advisor’s encouragement and very helpful letter that she wrote we applied for a reconsideration which was successful.

Last month our daughter’s concessionary bus pass was not renewed after she had been using one for many years. Once again an advisor from the Society wrote on her behalf. This is still ongoing as we wait for a decision on our appeal. We have appreciated so much being able to contact advisors and their professional support, kindness and encouragement.

If there is anyone reading this whose situation is similar to ours I would recommend - if you haven’t done so already – you join the Society and enjoy the benefits and support it offers. That and having the advice helpline available has made a great difference to us as a family."

Thank you Delia for sharing your story! You can contact our Families and Professionals Advisors for information, advice and support, here.

If you would like to support the work of our charity and help us to continue and develop this important work for the Fragile X community, you can do so here.


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