Tuesday, 18 December 2018

Fun day for boy, five, with muscle-wasting condition

Fun day for boy, five, with muscle-wasting condition

A FUN day was held at a children’s nursery to raise money for a boy with an incurable muscle- wasting condition who used to go there.

Ben Clarke five, was diagnosed with Duchenne muscular dystrophy, a severe type, in August last year.

The condition means he will gradually lose the ability to walk, eat and breathe.

He will need a wheelchair to move around and the family home will have to be adapted to suit his needs.

Ben, who lives in Wood Lane Close, Sonning Common, with his parents Alex and Lisa and one-year-old brother Zak, attended the Treetops nursery in Centenary Busibess Park, Henley, for about three years before he started at Trinity Primary School in Henley.

After hearing about his condition, nursery staff decided to hold the fun day to raise money for the family.

The Clarkes lived in Harpsden Road, Henley, for 10 years before moving to Sonning Common.

Ben suffered several falls, including one where he hit his head, and was referred to a pediatrician who carried out  tests which confirmed he was suffering from the condition.

Mr Clarke, 42, an operations manager, said the family wanted to keep Ben’s life as normal as possible but had to find tens of thousands of pounds to adapt their home and pay for specialist equipment.

He said: “We want to keep him in a mainstream school and are working hard with the school and local authority on a plan and support.

“There are big items Ben will require sooner or later, like an electric wheelchair which will be his only form of independence.

“We will have to adapt our house to accommodate Ben. We will change his playroom to living quarters downstairs and also have ramps and a wet room with a hoist.

“We will have to complete this within four years. A disabled toilet alone could cost up to £10,000 and we also need a specialist bed, flooring and to make sure the house is accessible.”

Dozens of families, including the Clarkes, attended the nursery fun day, which featured face painting, games and a visit by Quirks’ Animal Roadshows, of Caversham, who brought along reptiles including snakes, tortoises and chameleons.

There were stalls selling sweets, a tombola and silent auction as well as food and drink.

Nursery staff wore T-shirts with the message “Ben vs Duchenne”.

Mr Clarke said: “Ben was there five days a week when my wife and I were working full-time and he had a number of key carers. When they heard about his condition they came up with the idea of doing a fund-raising event.

“There was so much hard work put into it and amazing support from local businesses. Ben had an absolutely amazing day. It was a roaring success and thanks to every single member of staff for the hard work they put in.” Organiser Gemma Samuel, who works at the nursery, said: “We used to take care of Ben before he went to school.

“When he was here he was always so sweet, loving and caring — he was just a really lovable child.”

She described the fun day as “absolutely amazing”, adding: “We didn’t expect so many people to turn up.

“It was so nice to see Ben and his little brother again and they loved the whole day. Ben especially loved the snakes and lizards.”

Ben’s family also want to give him experiences that he won’t be able to have later in life.

They have already gone crab fishing on holiday, had a ride in a speedboat and ridden a rollercoaster and they are planning a trip to Japan so he can go on a bullet train.

Mr Clarke said: “We want to give Ben the best quality of life and the best experiences he can have. Every penny makes a difference and our battle cry is to be positive.”

The fun day raised £1,520.

In September, Mr Clarke and five friends completed a 50km walk and collected more than £8,000.

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