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OX5: Mum runs for son with rare disorder
A WOMAN whose son has a potentially fatal condition will be taking part in the OX5 run to raise awareness about his illness.
Five-year-old Joe Lewis’s brain has formed a ball of blood vessels which could burst at any time.
His mum Tracey is jogging the OX5 run for Oxford Children’s Hospital on March 10 at Blenheim Palace to bring attention to the rare disorder, called Arteriovenous malformation, or AVM.
The 39-year-old from Yarnton said: “It is like a big balloon in his brain which might burst any day. It is a ticking timebomb. It’s terrifying because Joe’s is four or five times larger than most AVMs which are usually the size of a 10p piece.
“He looks like any other normal boy. He can walk, talk, run, and play. But there are things he knows he is not allowed to do – like roly polys.
“And he can’t play ice hockey which he wanted to, because there is a risk that that could cause it to burst.
“You have to let him live his life though. We live every day as if it is the last as a family because it could be.”
Mrs Lewis, said her husband Iain, Joe, and two other sons Matthew, 15, and Kai, 12, spend a lot of time together and make the most of whatever time they have.
They have been living with the condition for a year since Joe had a seizure. A brain scan at the children’s cospital showed he had AVM.
Joe is a pupil at Woodstock Primary School in Shipton Road where staff keep an eye out that he is not playing too roughly.
Mrs Lewis said: “We were just devastated when we found out.
“It is so difficult because nobody knows if or when it might happen. But also because nobody knows about AVM either.
“I’m doing the OX5 to try and raise awareness of it, and thank the doctors who have been absolutely fantastic.”
This year’s run, which is organised by the Oxford Mail and sponsored by Oxford-based recruitment firm Allen Associates, raises money for the Oxford Children’s Hospital.
It is hoped this year’s 11th race will beat last year’s fundraising total of £60,000.
lTo enter the OX5, fill in the form, right, call 01865 743444 or go to oxfordmail.co.uk/news/ox5run
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