FARNHAM turned orange last Friday as a local charity set up by a schoolboy with a rare muscle-wasting condition held its latest ‘Go Orange Day’ in aid of Muscular Dystrophy UK (MDUK).

Help4Harry was set up by William Cobbett School pupil Harry Barnley’s parents after he was diagnosed with Duchenne muscular dystrophy in 2013.

Money raised by Help4Harry goes to MDUK to help with research into this muscle-wasting condition, which is life threatening and currently has no cure.

There are many different forms of muscular dystrophy and around 100 boys are diagnosed in the UK each year.

Harry’s mum and dad, Sue and Tom, have already raised £275,000 since they started fundraising for MDUK after Harry’s diagnosis, with his grandmother, Rose Barnley, being hopeful that “one day there will also be a cure”.

When asked how Harry felt about everyone turning orange for Help4Harry, dad Tom said at first he wasn’t sure, but changed his mind because “he wanted it to help his friends understand why he can’t run in the playground”.

“But, he doesn’t like everyone staring at him,” he added.

And discussing Go Orange Day, Tom continued: “It’s a very simple idea, people can just do something orange but it’s amazing support.

“For everybody to want to get involved, it’s not just our son, they’re supporting the charity and the research for that, it’s amazing.

“That’s what’s really important about days like this is raising the awareness and ultimately raising the funds to help with the research.”

A number of schools and businesses helped ‘turn Farnham orange’ including William Cobbett, Folly Hill and Badshot Lea schools, Ducati Alton where Tom works, Farnham Leisure Centre, Hawthorn Lodge and Specsavers in both Farnham and Alton.

Farnham Leisure Centre staff raised money by cycling the distance of London to Brighton, while Harry’s other grandmother, Barbara Bradshaw, organised a more relaxed coffee morning at Hawthorn Lodge to attract donations through cakes, tea, coffee and a raffle.

Barbara said: “It’s a very emotional state to be in and we have ups and downs, good days, bad days. But I keep the going-out face by the door and when I go out I put it on because everybody has got some difficulty in their life and Harry more than makes up for it. He’s got such a huge personality, he’s cheerful, cheeky, a little moppet and absolutely adorable.

“It’s such a devastating condition to live with and to know that all the time his condition is going to change, I find that extremely difficult to cope with.

“Harry anticipates his future, he knows that he will be in a wheelchair, he think that it’s unfair and he has times when he really gets quite depressed. But he has help with his emotions.”

Farnham mayor Mike Hodge was also at the coffee morning and said: “I think Harry’s family have done a fantastic job in raising so much money for research into Muscular Dystrophy.

“£270,000 I think so far is no mean feat, it really is fantastic and will make a significant difference to research, so I’m very pleased about that.

“I hope Harry’s family continue their efforts for years to come.”

When Harry’s grandmother Rose addressed the room, she spoke of how by the time Harry is 12 he will be in a wheelchair, his muscles will gradually shut down.

The family have had their house adapted, making it wheelchair accessible.

Harry is now on a new drug, Translarna, which has been shown to potentially delay the need for a wheelchair and keep children with the condition walking longer.

Harry’s uncle, Nigel Bradshaw, said: “Harry’s really, really resilient and I often say he’s quite cheeky, he’s got a sense of humour and I think that’s crucial to how he’s combatting this situation.

“It is progressive and does get worse and he’s feeling the effects now of not being able to run with his friends or play football as much and I think that resilience is really key.

“I think Jack (Harry’s older brother) is perhaps a little bit more sensitive so his caring side is really starting to show more, so I think they bounce off each other.

“It’s a cliche but every moment’s precious and we need to make the best of it, so we try and find humorous situations or enjoyable situations, I guess in that way it’s brought us closer.”

Three thousand pounds has been raised so far, but with two more totals still to come in Harry’s mum, Sue, is hoping for a figund £3,500 which she describes as “just incredible”.

This is a lot higher than last year, when £1,825 was raised for the cause.

Sue said: “I really felt as though lots of people got behind us, we have a lot of support locally from some brilliant friends and really supportive family.

“Who know what the total will be nationally, I know MDUK were expecting approx 70,000 people taking part nationwide.”

To read more about Harry’s story and to get involved, visit www.help4harry.co.uk.