Written by Sarah and Lucie
25 Years Ago
Twenty five years ago Fragile X was not in our orbit but it entered our world in the summer of 1994. After a long and arduous journey we finally had the answer to what made Lucie, by then 10 years old, so special.
The internet was in its infancy so it wasn't easy to find things out back then. We had had plenty of misdiagnoses as well as a horrific unfounded case of abuse but eventually in June 1994 I was told that Lucie had Asperger's Syndrome. I was also told that it may possibly be genetic and would I like us to be tested. Of course we took the opportunity and Lucie was diagnosed with the full mutation, me as a carrier and when my parents were tested it was discovered the gene condition had been passed from my father.
I am so thankful that at that time too we were put in touch with Doctor Jeremy Turk at St George's in London.His support and guidance were so valued and Lucie had the benefit of counselling from one of Dr Turk's colleagues.
Fast forward to 2015 and Lucie is living in her own flat (another arduous battle but eventually won!) She went to university in 2008 and graduated in 2012 in Brand Management. To say I was proud is a massive understatement; the only sadness on that summer day in Preston was that Lucie's much adored grandfather, my dear dad had died the previous autumn. He had been such a guiding light for us and underwent hours and hours of research himself into the best ways to help Lucie.
My dearest wish now is that an elightened employer would see the potential in Lucie. She has secured two office based jobs but both times she was 'let go' even though she told both of them at interview stage she had a 'disability'. It seems employers are not patient and far seeing enough. Ironically after I wrote this Lucie posted the following on Facebook and so I leave the last word to her....
"10 months ago I moved into my flat the time as flown by. Looking back on last year it seemed like an impossible dream when i was still living at home that I would ever be in my own place, in my darkest days i thought it would never happen. When I got that call the day after my brother's wedding I felt like the gods had finally answered my prayers, when I looked at the flat it needed a lot of tlc! but it looks un recognizable now to what it was. I am grateful every single day for this flat and how lucky I am when I hear on the news about people having to move back home because they can't afford the rent anymore it makes me even more grateful. This flat keeps me going, it's always there for me in good times and in not so good times I am so happy here I wasn't happy for a long time and struggled a lot after leaving university. No one prepares you for that, It's very over whelming leaving the comfort of the student bubble as I call it I never thought any of this would happen but I am so glad it did. Because honestly I don't know what would have happened If It didn't .I owe it all to Louise Mole (who works at the council) for helping us with the whole process and of course my wonderful mother Sarah Wakeford who for this time last year life was very different we have both come a long long way since then. I honestly don't know where I'd be without her."