Emily’s Abseil for Active Futures, Saturday 12th September

THE COUNTDOWN IS ON........(AGAIN) UNTIL I ABSEIL 400 FEET DOWN THE TALLEST PERMANENT ABSEIL BUILDING IN THE WORLD.

What was I thinking?

As we get nearer and nearer to the 12th September, it's slowly dawning on me that I have signed up to do something totally bonkers. Is it really true that on Saturday afternoon little old me - with my wobbly joints and woozy head - will be putting on a harness and scaling down a 122 metre building? I can't even start to think what 122m, or 400ft looks like at ground level - never mind when I'm looking down from a tower! In fact, the idea is so scary, I would utterly and totally be backing out right now if it wasn't for the enormous amount of support from friends and followers. For which we need to say a massive THANK YOU!

Two of my amazing friends have also agreed to take on this crazy challenge, Claire Boyce and Anja Mullee - I am eternally grateful for your support!

We've smashed our target of £1000 and we're told there's still more to come. So this is going to be a fabulous event which will make an amazing difference to the children and families on our courses. I'll be holding that thought in my mind when Clare and I push up the steps to the launch platform - and all the way down.

What's it all about?
Ehlers-Danlos Syndrome (EDS) is a horrendous congenital condition that me, my daughter, son, elder sister and several nieces and nephews have also inherited. Its painful, unpredictable progress, caused by a lack of collagen, is slowly robbing all of us of normal lives.

I'm only 36, yet every day brings constant joint pain and crippling fatigue due to muscle weakness, unpredictable sickness and fainting due to heart rhythm problems, plus appalling stomach pain as my digestive muscles have seized. I am increasingly unable to do the things I used to take for granted and - despite looking healthy - now need a wheelchair and carer just to function day-to-day.

But am I giving up? NO!!!
Am I going to abseil down a ridiculously tall building
and raise money for EDS patients while I still can? YES! YES!! YES!!!

A lifeline for families with EDS
In 2013, my sister Pippa and I, together with a Sports Scientist, Steve, set up Active Futures - a non-profit social enterprise dedicated to helping people like us face a brighter future. (active-futures.org.uk)

Our first programme - an Activity & Conditioning Programme for children with EDS - has already helped 12 children increase muscle strength around loose joints, improve balance and co-ordination and grow in body confidence. By staying active they'll hopefully be able to stay out of wheelchairs for longer and so live more fulfilling and inclusive lives. This free Saturday morning programme has been hailed as "life-changing" by the participating children, a "lifeline" by their parents and a “5 star service” and “the shape of the future” by one of the UK's leading EDS physiotherapists.

But we need to do more ...
There are thousands of children affected by EDS throughout the UK for whom our simple programme could mean the difference between a future full or pain and disability ... or a future full of promise.

The first £1000 raised from this weekend's abseil is going to fund much-need workshops for parents of children attending our courses. As well as much-needed emotional and practical support, they'll acquire vital pain management and pacing skills to help them guide their children as they grow, as well as assertiveness skills so they can advocate for their children in school and medical settings.

Every pound over our £1000 target will go towards running a new term of Activity & Conditioning Programme in September - giving even more affected children the chance of a brighter future.

CAN YOU HELP US RAISE EVEN MORE THAN WE EVER THOUGHT POSSIBLE? Please share my story and tell your friends. Every penny will make a big difference, and will help my sister and I continue our work with families affected by this painful, debilitating condition.