Who is William?

For those of you that are new to William, he is a 9.5 year old with a rare severe intellectual and physical neurogenetic condition called angelman syndrome. He has life threatening epilepsy with 7 types of seizures and stops breathing with his big ones and has seen approx 60 plus blue lights and high dependency or intensive care stays, sleep disorder, gross and fine motor issues, non verbal to name a few but he lives life in the moment and appreciates everyone. A stranger is merely a friend he hasn’t met yet!!!

The challenge- 256 mile race in one go, target time 80 hours!

Some may question why one would want to go around the Thames Ring 250 let alone a second round again and why that might be a reason for raising funds. Here are Andy’s thoughts on it.

Firstly, running is therapy. It is a space to free the mind. When most of the body is focussed on running, the mind can relax and slow down and issues in life feel smaller and more manageable.

Secondly, there is always a need for more funds. Private therapy is now nearly £100 per session but the results are fantastic, as any videos of William walking now show

Thirdly, William never stops. He’s always driven to progress. Having made the huge step to being able to walk he is now working on standing up without support. So why should I stop, am I happy? I can channel my own #BeMoreWilliam in trying to get under 80 hours. Knocking 7.5 hours off is a big ask.

It’s also a huge opportunity to raise awareness of Angelman syndrome. From us and from William making friends during runs see below. Everytime people see our vests starts a conversation about who the cheeky boy is, or if he is with us, he starts his own conversations! Raising awareness is key to success for people raising money for clinical trials or therapeutics or petitioning government to make kids (like William), lives better! With each new person that learns about William or our crazy events to raise awareness, there is a ripple effect of others talking about it!

Fourthly, it is a running holiday, I love running as it has brought my both physical and mental strength as well as being how I met my wife, Emma. So having a 4 day running holiday with my wife helping is ideal respite as we head towards the summer holiday and the hugely increased caring requirements with no summer clubs or anywhere suitable for him to go.

Fifthly, the training has involved lots of runs pushing William in his sports wheelchair which has led to meeting lots of new friends for, and fans of, William. William is getting too large for the wheelchair (he can rest his feet in the front wheel which makes running much harder if I don’t spot it) and they are far from cheap. To get a proper decent adult sized running chair (yes he’s adult size now) is £6-9k. We may have an interim second hand chair but even new wheels come in at £600 for normal wheels and £1000 for sports wheels! It’s an activity he loves and we both love running with our boys. Finally, it is to prove to Eli that despite having the extra care needs of looking after William, things that look impossible are still achievable. And they adore being able to do activities together!