Five years ago at the age of 9 , Toms best buddy Pete got glandular fever which led to ME. Its been a tough time to say the least for Pete and his family . ME was something I'd not thought about much until this happened so this walk is as much for us to raise awareness of this debilitating illness . Tom (14) and Ruby(10) have asked to join Petes mum and others on the walk so really your sponsorship is for them to walk 😀.
He tried to keep going to school, part-time, for the first couple of years but he never improved and then got much worse when he attempted secondary school (even for a tiny amount). He had to leave school completely after a term of Y7.
The rest of Y7 he was very ill and he just had to rest....and rest. Thankfully, after cutting right back he started to slowly start to make some progress at the end of the Autumn term of Y8. It was only then that he started with one home tutor, just for 15 minutes.
Over the rest of Y8 and into Y9 his capacity to study has improved and he has slowly built up to 4 tutors and has increased his time. He is also now able to leave the house more regularly, for a short local visit, but ideally no more than once a week, during term time ('kitchen school'!), a bit more in the holidays.
His dignity, humour and resilience is amazing. Through necessity (in order to not go backwards and hopefully keep nudging forwards) he leads a totally disciplined life. Every single day, every activity he does has to be factored in and measured. He has to plan, and pace and rest. All activities are broken down into cognitive, physical, social and he has to stay within his activity baseline (or current energy 'enveloppe') to remain stable.
It is very hard to comprehend an illness that can go on for so long and, unless I had lived alongside it, I could never have conceived how debilitating it could be and how far reaching it's effects were. It's an illness you can take no chances with. There are some young people who are so severely effected their lives can hardly be imagined.
New research is starting, thankfully, to look more promising. Professor Ron Davis at Stanford University (whose own son has severe M.E) is one of several now doing ground breaking studies. The inspirational Jennifer Brea's new doc film 'Unrest' (acclaimed at Sundance) is spearheading an impact campaign targeting medics, scientists and policy makers.
Let's keep up the momentum for quality bio medical research. Effective treatments are needed now.
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