Updated: Apr 3, 2019
Renny Krupinski and his wife and Kaitlin Howard are raising funds and awareness for Fragile X through their play, The Alphabet Girl (@AlphabetGirlThe), at the Edinburgh Fringe. Find out why:
For every parent and relative associated with Fragile X, the memory of getting to grips with facts is all too prominent when presented with the reality for the first time...that test result, the meeting with the doctor or consultant. For anyone not associated with, affected or touched by Fragile X the very existence of the Syndrome isn't even on the radar.
Trying to explain what it actually is, is hard. Trying to quantify how it affects you is harder. There are many Syndromes that are obvious, wider known, better understood, tolerated and yet Fragile X continues to remain mostly an enigma and missed by the population at large.
This is not through malice, but through uninformed ignorance. Even doctors, in the main, know nothing about it. Indeed I remember my GP about 18 years ago suggesting I look on the Internet as he'd never heard of it!
I write plays, direct, act and choreograph violence for theatre, TV & film. I rarely meet anyone who knows about Fragile X but when I explain about my twin sons Harry & Zackary people are fascinated. When they meet them they are charmed. They tend not to see the volatility, the mood swings, the difficulties...and why should they? It's not pretty or fun to deal with, but equally why shouldn't they? It is the everyday reality of what this far more common than anyone knows Syndrome is.
I don't want to slap it in people's faces but equally I'm not going to hide it away and pretend it's not there. Harry and Zackary are sensitive, wonderful young men and deserve their place amongst us all without fear of bullying, ridicule or abuse...which again probably every parent associated with Fragile X has almost definitely encountered.
Indeed Zackary is starting a long desired ambition of his to act this October having been offered a place in a year long drama course with Dark Horse Theatre in Huddersfield. Check them out. An adult special needs theatre company that does wonderful work.
So, in my small capacity in dealing with the public, I actively try to spell out what it is and unashamedly ask for support explaining that any small coins are good and that notes are acceptable too. Awareness, education of the masses and a deeper understanding of this Syndrome is what I campaign for and why I rattle the bucket, glass and jar and why I or my wife speak openly and candidly about my sons, the Syndrome and ask for support.
I may be speaking to the converted, but spread the word and campaign for awareness, tolerance and research. I keep trying to write the Fragile X Play...so far it hasn't fully formed and starts to crumble before it makes coherent sense...a bit like the chromosome itself, but one day it will be there and then I shall be asking for your active support by the legion. In the meantime I shall continue to collect every opportunity I get.