April 23, 2019
As part of Walk with M.E. 2019, ten members of Action for M.E.’s staff are taking part. In preparation for the campaign, we all had many ideas about how we would make our team special.
Our Fundraising and Children and Young People’s teams highlighted a group of young people who they think about every day and who drive them in every piece of work they do. Our children and young people’s community call them the SAMS (severely affected members). Meaning, those who are bedbound and housebound.
Although they are unable to contribute to our team’s overall step count, they have been keen to get involved every step of the way. Lee is 14 years old and is just one of the young people who we are walking in honour of.
Before he became ill he tells us that his life was “fun, I could do normal things – go to school, play out with friends, do sport and go to army cadets. I liked to go on camping days out with my family and going to theme parks. But now, I can’t go out or play, I can’t go to school, I’m too tired to do anything.”
One of the toughest things about living with M.E. is “not being able to do sport or play football with my friends. Or just not being able to go outside. My mum, dad and dog Max help me cope but it sucks and everything feels like hard work.”
It is estimated that M.E. in the UK affects 33,000 children and young people. Of these affected, a third are totally excluded from full time education and employment. As a result, many young people with M.E. face isolation due to loss of friends and a lack of understanding.
All money donated to our staff’s Walk with M.E. team will go towards supporting children and young people affected by M.E. You can visit our fundraising page here.
“The toughest thing about his M.E. is seeing how it affects him and how frail he looks. It’s tough not being able to do anything much to help him.” – Alana, Lee’s mum.
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