Written by Kathryn
1990
Our father was seventy-four at the time and looking after two sons, Ian and Howard (aged forty-nine and forty), and a daughter, Susan (aged thirty-six), all affected by Fragile X Syndrome and still living at home. Though we worried about the future and had no idea what it would hold, my father never wanted me to feel responsible for my siblings. Around this time, following an ectopic pregnancy, I was told that I had a 20% chance of having an unaffected, healthy baby – as I have the full mutation – casting more uncertainty on the future.
2015
Unfortunately my father’s hope that I would not be responsible for my brothers and sister has proved to be unrealistic. They are very much my responsibility and caring about them is what I do, but as well as organising their care and managing their money I can still enjoy my time with them as a sister. Howard lives with a loving family through Shared Lives, visiting me every Friday for a pub meal and shopping. Ian and Susan still live in the family home with support through an individual budget. Things are not so good for Ian but he enjoys growing vegetables in his garden and keeping up with Leicester City Football Club. Susan and I probably have the most normal sibling relationship – we enjoy shopping, meals out and going on holiday together but also drive each other up the wall!
I now have a daughter Lizzy, who is twenty-four and my little miracle! Graduated and working at a university, she is adored by her uncles and especially by her Auntie Susan.
Over the 25 years some things have worked out for the better and others not. Too often I have felt more like a carer, care manager, mother or father, rather than a sister. But all things considered my three siblings have fairly good lives and I have a precious daughter of whom I am tremendously proud and they have a wonderful niece. It has all turned out much better than I ever thought possible.
Through these 25 years the society has been a lifeline with information and support, but above all through your friendship.
So thank you to all those I have met over these 25 years - my other fragile X family.