Child of Pride in grim battle
Jenson Belkevitz receives his Pride award from Adam Woodyatt
A LITTLE boy who won the Citizen’s Pride in Milton Keynes 2011 award for battling against blindness is facing another fight – for his life.
Just days after four-year-old Jenson Belkevitz received his award, his family was dealt an almighty blow when doctors discovered the reason for his fading vision.
He was diagnosed with Battens disease – a rare degenerative condition that is terminal within a few years.
His mum, Cheri, who lives in Newport Pagnell, said: “Basically everything awful that can happen to the body and brain happens with Battens Disease.
“When we were told the prognosis it was the worst day of our lives.”
The rare condition slowly strips the sufferer of every ability. They end up bedridden, stricken with dementia and as helpless as a new baby.
Today Jenson, now five, is a very different boy to the child who, just months ago, could run and chatter and play with his beloved Thomas the Tank Engine toys.
“He can no longer walk. His speech has gone and he is totally blind,” said Cheri.
“The only thing left is his amazing smile. For, despite everything, he is still a lovely, happy little boy who appreciates everything we do with him.”
Crucially though, Cheri and Jenson’s dad Dave, have noticed his short-term memory is starting to fade. For this reason they have set up a fund to pack his brain with exciting experiences – such as a trip to Lapland and swimming with dolphins – while he can still remember them.
This week the fund was given a £500 boost by organisers of a Friends of Fulbrook School reunion. It can be reached on www,jensonsfund.org
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Weather for Milton Keynes
Thursday 23 May 2013
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