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Norwich dad will get on his bike to raise cash for sick son

PUBLISHED: 06:30 08 July 2011

Jason and Rebecca Harwood with son Benjamin, who has the rare condition Lowe Syndrome.; Photo: Bill Smith

Jason and Rebecca Harwood with son Benjamin, who has the rare condition Lowe Syndrome.; Photo: Bill Smith

Archant © 2011

A father whose son has a devastating rare genetic disorder is set to cycle the length of the country to raise funds and awareness of the condition.

RAF Marham corporal Jason Harwood and his wife Rebecca, who live in Costessey, Norwich, learned within hours of becoming first time parents that their son had the genetic disorder Lowe Syndrome

The condition affects young Benjamin’s eyes, kidneys and brain and it is feared that the youngster, who is now four, will not live into this thirties.

Cpl Harwood, a weapons technician in the RAF, is set to ride with three friends from Land’s End to John O’Groats to raise funds and awareness for the Lowe Syndrome Trust. The group, who will set off on July 15, hope to cover the 900 miles in nine days.

It will be the second time that Cpl Harwood has taken part in an epic cycle ride for the charity. Two years ago, together with his friend Cpl Adam Fitzsimmons, he cycled the breadth of the country from Holyhead in Wales to Cromer. They completed the 300 miles in three days, raising more than £6,000 for the cause.

Cpl Harwood, 32, who has been in the RAF for 15 years, said: “The charity only raises money for research. Only one in a million people are diagnosed with Lowe Syndrome and Benjamin is just one of about 50 or 60 people in the country to have the condition.

“We were devastated at first, the world dropped from under our feet. He is a happy little boy, but due to having Lowe Syndrome he will probably not live into his thirties and may need constant care.

“He has learning difficulties which, coupled with low muscle tone, means that the development of his mobility is delayed, meaning he may never walk.”

Benjamin was first diagnosed just two hours after he was born, but it was five months before his parents got the genetic test results back. The youngster had to have cataracts removed at just eight and nine weeks and has to wear special glasses indoors and outside.

He will have a degree of learning difficulties, but it is not yet known how severe it will be and he will also suffer from kidney problems as he gets older. His father, whose wife is due to give birth to their second child in seven weeks, will take part in the cycle ride with colleagues Cpl Fitzsimmons, Graham Lambe and Rob Hoult. To sponsor them, go to www.justgiving.com/tmsf-lejog

To find out more about Lowe Syndrome, go to www.lowetrust.com

Do you know a child with a rare illness? Call reporter Kate Scotter on 01603 772326 or email kate.scotter@archant.co.uk

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