So, here I was just sitting minding my own business sitting with my nearly 8 week old daughter in my arms when a programme came on tv called Saints and Scroungers.
If you’ve never seen it before the premise is simple. Matt Allwright (from Rogue Traders/Watchdog fame) tells us the story of some people ripping off the government usually by way of some sort of benefits cheat (The Scroungers) but sandwiched in the middle is a lovely story about people who are just trying to get by following some sort of personal or family issue and the people/groups/charities who have supported them (The Saints).
Sandwiched in between the cases of a woman using multiple identities to defraud the benefits agency and the case of an accounting fraud at a chip shop was the story of a family whose daughter had been diagnosed with Rett Syndrome.
I’d never heard of Rett Syndrome before but as I sat watching the programme I became something of an emotional mess.
Their daughter had essentially not shown any signs of the illness in the first throws of life and it was only as she failed to meet milestones that the parents began to notice that something was wrong. Still, despite the parents insistence that they thought something was wrong, nothing was diagnosed except using an umbrella term of a Global Learning Deficit. Essentially this is something the doctors like to use when they aren’t sure what the issue is. How do I know this? Because they said the same thing about my son.
Eventually their daughter was diagnosed with having Rett Syndrome. This was a life changing diagnosis which meant that the mother had to leave work to become a full time carer. With their child withdrawing more and more, failing to keep eye contact and not wanting physical contact the family were put in contact with Portage (http://www.portage.org.uk/) who aim to help engage children through play and sensory skills. Furthermore the family contacted Cure Rett (http://curerett.org) who have aided the family throughout the process.
So Steve, I hear you ask, that’s a great story and everything but why are you telling us?
Well, I was incredibly moved by this story so I did a bit of research and ended up contacting Cure Rett and offering my services for fundraising throughout 2015. Not only that but I think it’s worth trying to raise awareness of Rett Syndrome where I can and, this is where you come in, where you can. I received a lovely reply from the CEO of Cure Rett thanking me for my email and saying I’d made her cry happy tears which again cracked the façade of the rugged, action man image that I try to portray as I wept again for the second time that day. Overall it was a pretty emotional day. I’m blaming my daughter she’s turned me into a blubbering wreck of a man.
With my running events, duathlon and triathlon events and what have you throughout 2015 I’ll be setting up a fundraising page for Cure Rett which I’ll be writing about soon. I’ll also be writing a little blog piece about Rett Syndrome in an attempt to explain it in a bit more detail.