FOLLOWING the announcement of her New Year Honour, Help4Harry’s Sue Barnley sat down with the Herald, taking a look at seven successful years of the charity.

Help4Harry was set up in late 2013, after Harry was diagnosed with Duchenne Muscular Dystrophy (MD) – in what Sue described as the “most severe form of MD, that unfortunately affects mainly boys”.

Speaking to the Herald, Sue explained how the charity “originally set out to be a family fund connected to Muscular Dystrophy UK”, but had grown into its own entity.

“We still do some bits for them, but not as much, because we found people that have supported us really wanted to do, in these later years, things for Harry – for the money to come to Harry’s welfare – for anything he needs.

“He now has an off-road hopper that he goes out in, and The Farnham Hedgehogs did a fundraiser for that.”

Thanks to funds raised for Harry, the family were also able to buy an electric wheelchair – costing £8,000 – with Sue recognising that “nothing is cheap when it comes to disability”.

Activities across the years have included marathons, fun days and hot chocolate sales, with the family waving off a group at the airport as they made their way to climb Mount Kilimanjaro.

In total, Sue believed the charity had raised £300,000 for Muscular Dystrophy UK – with a portion going towards items needed for Harry’s welfare.

Despite the charity’s success, the family took a break from the charity and events in 2019, as Harry prepared to join Farnham Heath End School.

“It all got a bit much, I think for all of us, so we took a year off but now we’re back with a bit of a bang this year,” Sue promised, with plenty of activities and events planned to raise funds for the charity.

But perhaps Harry’s biggest transition of the last couple of years was his move to senior school. Now aged 11, he has since joined Farnham Heath End School (FHES).

“It’s a big jump from primary to senior, but the school have been amazing,” Sue told the Herald.

“But he’s finding it a bit of a struggle because it’s bigger, he has an electric wheelchair – he doesn’t use it as much because I think he’s still a bit embarrassed about it and no one has one – he’s finding it quite tough.”

Despite Harry’s struggle, Sue described the school as “brilliant”, having already installed one lift, with the plan to install two more after the charity’s Mr Motivator event on Monday, January 27.

Students will be invited to take part in a workout session from 2pm, with an evening event open to the public from 6pm.

All funds raised from the workout event will be donated to the school, with plans to install lifts to both the art and science departments.

The charity is also set to host the Go Orange Day on Friday, February 7, as well as Harry’s Hoedown at Farnham Rugby Club on Saturday, May 16.

But Harry won’t be stopping there – as he also wishes get to the top of Mount Snowdon, with Sue hoping to “put a team together and get him up Snowdon in his off-road hopper”.

The charity’s exciting plans follow the announcement of the New Year Honour’s List, in which Sue was awarded a British Empire Medal (BEM).

“My mum nominated me. I think it was about two years since [nomination] and I think she gave up hope. She showed me all these letters that friends had sent and put together, and told me that she thought nothing was going to happen with it,” Sue said.

“Then in November – the letter popped through the door.”

Sue was away at a Duchenne conference meeting when the letter arrived, and received a call from two excitable children.

“They told me they’d received the letter – I told them to open it but not to get excited – but there it was. My mum was beside herself.”

Swearing the children to secrecy for six weeks, the honours were announced in December 2019, with Sue set to attend an official ceremony in May.

“It’s an amazing feeling, we have such a good group of the community that are always behind us and always want to help and do things. That helps me when I’m doing this, it sort of drives us all forwards,” Sue continued.

“It all helps to get the word out and the awareness, we didn’t know anything about muscular dystrophy before harry was diagnosed, so the message is getting it out there about Duchenne as well.”

Looking at the future for the charity, Sue said it depended on Harry. She said: “As long as Harry is happy with it all, then we’ll keep going, he’s the one that drives it obviously.

“The psychological demands that it [the charity] has as well, it is not just the physical.

“We feel fairly on an even keel at the moment, it’s just his condition is progressive, so it’s just going to get harder for him as time goes on. He’s going to go through quite a journey, and a highly emotional one too.”

For tickets to Farnham Heath End’s Mr Motivator event, visit https://tinyurl.com/w8cuhzp

For more information on upcoming events and how you can support Help4Harry, visit their Facebook page @help4harry