Last year a friend's 11 year old son was struck down almost over night with ME. This is his story, written by his mother, my friend Sophie, for whom and with whom I am running the Bath Half. As many of you who know me may know, my sister also suffered from chronic fatigue for many years (which was for a long time frustratingly misdiagnosed and treated as depression). It is the most debilitating and appalling disease, as any of you who have had it or have had any contact with anyone who has had it will know. But imagine you are 11 and you think your life is already over. Please read Ned's story, and if you can help him get better by supporting this cause and help me run with a bit more spring in my step, please sponsor me 

Dear All of You

As you are all aware our gorgeous, vital, funny, lover-of-life Ned, fell ill with M.E. at the end of April last year. 

Having been an all singing, all-dancing participant of life - Head Boy at King Edward's School, Head of House, all sports colours even though he was in the D-team for everything! he came out of school one afternoon saying he felt tired, went to bed and then found he was unable to get up the next day. 

It is as if he came out of school and got hit by a truck - all life as he knew it stopped at that point. 

So, the last 10 months have been a difficult journey for Ned. 

There have been low points - the unremitting exhaustion, no school at all, no energy to be with friends, no running into town for sweets, no sweets! and a gluten-free, dairy free and sugar free diet that is....well, shall we say, fairly challenging.

He has recently found it hard to be with his friends and so has asked that we keep them away until he is better. This was a tough decision for us to honour but honour it we have. I must just say here that a couple of his friends have been so kind, so patient and offered such continuing support regardless of Ned's mood, anger, frustration - it is hard to believe they are only 11 years old. 

He is currently asleep for approx 21 hours out of every 24. And when he is awake he feels mostly lonely and sad. 

Since Christmas he has been unable to walk more than a few feet and as he has categorically banned all talk of wheelchairs, when we do take him out Phil, Max and I take it in turns to carry him. However, for the most part he is bed and house-bound.

It is tough tough tough. 

HOWEVER, there have been surprising positive times too. We have giggled through a few crazy alternative therapies. We have talked....really talked....about life and hopes. He is a remarkably perceptive kid. We hug all the time. He is very physical and needs this close contact. It is often Phil or me squished in his single bed hugging him while he falls asleep/chats. 

We play a lot of cards and have a laugh.

We watch a lot of box sets and become completely wrapped up in the characters. 

He is mostly to be found with our cat Tizzy - who also sleeps 21 hours a day so Ned suspects she has M.E. too. 

Ned's courage and humour throughout this journey has been extraordinary and Phil and I can only wonder at his inner strength. And we feel certain that it is this strength that will see him turn this around and get out the other side.

SO, THAT'S WHAT'S GOING ON WITH NED. 

Action for M.E. is a charity that uses funds to investigate the causes and cures of the still misunderstood M.E. It also supports sufferers and their families through this long and difficult disease. 

In a nutshell they are awesome and so on March 4th I am donning a pair of spanking brand new trainers and going to drag my bottom around the Bath Half - 13 miles running. Although I'm pretty skinny I'm not the fittest! and I have to say that running doesn't come as naturally to me as, say, sitting with a coffee. However, I'm doing this for NED. 

IF I make it round the course and IF you feel like donating towards Action for M.E. I would be eternally grateful (but fully understand we all have our own charities we support so no worries if it's not possible). At the very least please raise a toast to Ned on March 4th and keep him in your prayers. 

I do have a Giving Page but haven't a clue how to activate it SOOOOO after the run I will send out the bank details for an account set up for this charity...and then it's over to you. 

Thanks guys. And thank you so so much for:

the telephone calls, visits, texts, e-mails, funny cards and the asking and the praying and the KINDNESS beyond belief. 

Loving, 

Soph xxxxx