The mother of a teenage boy battling ME has created a website to help him and others with the condition deal with isolation.
Bella Hoare has spent the past four years caring for 15-year-old Charlie as he struggles to cope with the debilitating illness.
On good days, Charlie is able to sit up on the sofa while on others he is confined to bed with severe muscle and joint pain and exhaustion.
Ms Hoare, 53, from Brighton, has been constantly searching for ways to help keep her son connected to the outside world and entertained.
She said: “This is such an isolating illness which is particularly difficult for young people.
“It also does not help that ME is not widely recognised and is often misunderstood. People can be very cynical about it and this can make things very hard.”
The website, called www.MEspace.org, is filled with artistic activities and inspirational ideas that can bring sufferers together and help stem the boredom of being in the house all day.
Ms Hoare said: “When Charlie is laid low with the many symptoms of ME life, it can be very tough indeed.
“It means that his exhaustion is so extreme and the light hurts his eyes so much, that all he can do is stay in bed with the shutters closed.
“At first friends come around to visit, but as the weeks and months go on the visits drop off.
“It’s heartbreaking that I see Charlie get so lonely – if a friend cancels at the last minute I can see that he is so upset.”
Growing popularity
“One night I was sitting mulling over the isolating situation that we both find ourselves in when I thought wouldn’t it be wonderful to have a website where others like Charlie could go to feel a sense of community, look at others artwork, discover ideas for creative activities and read others stories or go into a chat room to see how others where feeling on that particular day.”
Since its launch, the website has grown in popularity with interest from as far afield as New York, the Caribbean and France.
Ms Hoare said: “We really want to get it out to other countries and get a real worldwide connection going on. Hopefully it will end up helping a lot of people.”
Charlie was diagnosed in March 2009 and is under the care of a consultant at the Royal Alexandra Children’s Hospital in Brighton.
He said: “I spend most of my time in bed. I have had to leave two schools and can’t see friends often, or for too long.”
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