Blog: Supporting FAST UK and raising awareness of Angelman Syndrome – our journey so far… by Sarah Washbrook

Supporting FAST UK and raising awareness of Angelman Syndrome – our journey so far…

So where did it all begin?  I knew very early on that something was unique about Ivor. I waved my hands, but people said I was fussing; he’s just a boy. I suppose this is when the grieving started for me, the fear, the worries.

One of my lowest points was crying uncontrollably during a sunny village summer fete whilst other children ran around me playing, and then all the long dark exhausting nights crouched over Ivor’s bed, so lonely, begging him with all my heart to go to sleep, to be normal.

Ivor was diagnosed with Angelman Syndrome just after his third birthday, a year ago.

Nothing dramatically changed following diagnosis.  I still felt sad.  I still felt angry.  I still felt confused.  But a slither of energy had been given to me and I needed to do more.

This is what took me to FAST UK.  Knowledge, inspiration, positivity and hope.

FAST UK empowered me to talk about Angelman Syndrome and its impact on our family – and I decided then that I wanted to raise more awareness of Angelman Syndrome and fundraise for FAST UK, and above all to celebrate my little Ivor.

So Ivor walked 1km every day for a month around our home village in Monmouthshire, inspiring hundreds of people to walk with him and raising thousands of pounds for FAST UK.  Far more than I could ever hope for!  This was closely followed by a fun-filled “paint run” at Ivor’s sister’s school and a heart-warming tea and cake afternoon at our local church.  

Word of Ivor’s walking journey was spreading!

I grabbed every opportunity to push it further and was delighted when it reached the Welsh Government.  

We held a Drop-in & A Session at the Senedd (Welsh Parliament) last month, giving us a valuable chance to speak to government ministers about Angelman Syndrome and FAST UK, and push for much needed government policy changes – from diagnosis, to care provision, to access to mainstream education.  This was followed by a Statement in Parliament, which has spread through social media – a huge boost for our Angelman community.

And I won’t stop here!

More than anything I have been continually amazed by the simple kindness that has been shown to us, and how people genuinely want to understand more about Angelman Syndrome and FAST UK, and do anything they can to help.  You just need to ask (and maybe ask again!).

It’s so important to raise awareness of Angelman Syndrome beyond our community, to shout from the rooftops in fact!  But I also feel that, through my fundraising and awareness activities, I am able to talk about Angelman Syndrome at a very personal level. I want people to stop me in the street to ask how Ivor is.  I want friends to understand when we’re too exhausted to meet up.  I want people at the school gates to embrace Ivor’s huge hugs!

I still feel sad, angry and confused (largely depending on how much sleep Ivor has allowed me), but through fundraising and campaigning I am doing something positive; and in my own little way supporting FAST UK and the fabulous work that they do.

I’m not kidding myself that there will be a cure for Angelman Syndrome tomorrow, but there are so many encouraging developments going on around the world right now, and because of that I am allowing myself to hope – and in the meantime we will keep on walking!

 

By Sarah Washbrook.