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Caring for Connor is Thanet Extra’s Charity of the Year for 2015.
Connor Olsen is five years old and suffers from Duchenne muscular dystrophy (DMD).
The condition causes muscle degeneration, which means he could be in a wheelchair by the age of 10, and has a life expectancy of just 20. There is no known cure for the condition and research into treatments is not funded by the NHS.
His family want to make sure there is funding to ensure Connor, who goes to St Crispin’s Infant School, has everything he needs to fight the progressive disease.
Connor’s mum Georgina said: “It’s fantastic we’ve been chosen. The support in Thanet and across Kent has always been overwhelming.
“Connor is ok at the moment, but he is slowing down a little bit now, he struggles up the stairs more and has less energy. He is in Year 1 at school and is really enjoying it.”
“But time is ticking, Connor’s muscles are wasting, and time goes by so quickly so we’re hoping people can donate a bit of their time or money to help.
“A lot of people seem to think that it’s not too bad and he seems fine, but to us it’s devastating that he’ll progressively lose the use of all his muscles, will not be able to breathe unaided or turn himself. We wonder how long we’ve got left with him.
“His heart is a muscle, so that will be affected at some point.
“There’s nothing we can do to stop it and through the next 10 or 15 years we’ll be watching him slowly deteriorate.
“We just have to do all that we can to make his life as good as it can be.”
Since setting up the campaign Georgina and husband Wayne have received widespread support.
They are determined to ensure money is in place, should suitable treatment become available for Connor.
They also want to contribute to the ongoing research into the illness.
Georgina said: “When we first got the diagnosis in March 2013 it was devastating – we could have taken ourselves off a cliff. We were in such a bad place. We thought what shall we do?”
Communities across Thanet have thrown their weight behind the campaign, moved by Connor’s plight, and it has so far raised more than £22,000.
Georgina said: “There is lots going on all around Thanet and beyond. The support is absolutely amazing and so overwhelming, it gives us real hope in this fight to save Connor and get a treatment for DMD.
Upcoming events for the charity include a bingo night at The Hoy pub in Margate. There will also be a dinner and dance at the Dog and Duck in Pluck’s Gutter in April, and a Fun Day at Jungle Jims play area in July.
To find out more, visit facebook@com/caringforconnor and the website www.caring4connor.com