“Approximately 6,000 children are born in the UK each year with a syndrome without a name – a genetic condition so rare that it is often impossible to diagnose. Our Big Ambition here at SWAN UK is that each of these families will have the support they need, when they need it.”
How crazy is that?? Imagine having to live your life with a high possibility of NEVER having answers as to what is causing your issues? For many (including my own family) this is a reality, even now in this age of vast medical & genetic research!
For most families getting a diagnosis remains just as important to them as their child grows up. Without one families can struggle to access the right support. They have no idea what the future holds for their child or if other children they may have in the future could be affected.
I joined this wonderful charity as a parent approximately 7 years ago after having my first child, and have continued to gain support after having a second child whom is also affected by a rare genetic condition. I cannot thank the SWAN UK family for all the love & support they have given us over the years & the friends we have made along our journey.
Fast forward to July this year & I received an extremely humbling email from SWAN UK asking me whether I would consider applying for the role as the FIRST Welsh Parent Representative! I was so excited I actually squealed! Now I have been casually organising family events for SWAN UK for a number of years, but this was an opportunity to make more of a formal impact in the crazy world of Genetics, meeting professionals, recruiting new families along with supporting existing ones. HOW THE HELL COULD I REFUSE THE ROLE??? I don’t think I’ve completed an application form so fast lol!
I’m extremely pleased to say I GOT THE ROLE! (can you tell I’m excited yet???). I have a few months training ahead, but cannot wait to get started!
Watch out South Wales, I’m coming to educate you ha!
Amy Griffiths, Well Being Freedom Services Ltd ©