Our journey started after my 4th son Jack was born in July 1990, he was quite sickly and unfortunately very floppy.  After 6 weeks he was still like a newborn, and a few months later still could not hold his head up, I then thought he had cerebral palsy like his sister Alexandra, but that story is for another day.

My GP felt that Jack should have further tests and we were referred to St Georges Hospital in London, no mention of what could be wrong with Jack, so we trotted off to London and tests were done and really nothing more was discussed.  A few weeks later I received a call from our local hospital St. Peters, requesting that we all come to the hospital to discuss the outcome of the tests and requesting all the boys attend.  A little nervous by this request we then went to see our pediatric consultant who, within minutes of getting into her office informed us that Jack had Fragile X Syndrome and that it was possible the other boys were also affected by this disability.

My immediate reaction was to ask if Jack was going to die?  When she said no, I then asked well is he going to grow up and become a man, will he lead a normal life (whatever that is) – so many questions spilling out of my mouth……

I was told that Jack would have a learning disability but not how it would affect him, that two of my three other boys probably also had the disability but not Elliot?!  Elliot who was sitting listening to this asked why not him?  The consultant did not know enough about the disability as St Georges Hospital in Tooting had only recently started to research FXS (Fragile X Syndrome) and in the grand scheme of all things disability this was a relatively new one to add alongside Downs Syndrome https://www.downs-syndrome.org.uk/about/history-of-downs-syndrome-2/ which at the time was the most common cause of learning disability in children.