Work begins on conversion of family home of nine-year-old boy with debilitating disease

BUILDING work has begun to adapt a house in Sonning Common for a boy who suffers from a debilitating disease.

Alex and Lisa Clarke spent three years searching for the right company to make their home in Wood Lane Close easier for their elder son Ben to get around.

The nine-year-old was diagnosed with Duchenne muscular dystrophy in 2017 after his parents had noticed him falling over a lot and since then he has been slowly losing his ability to move and breathe independently.

The changes to the family’s property will include making the ground floor navigable when using an electric wheelchair by widening the doorways.

Ben’s new bedroom will need to be on the ground floor and enable his wheelchair to move around it. He will have his own bathroom and special bed.

The Clarkes, who also have a five-year-old son called Zak, were helped with the design and new layout by an interior designer.

The building work is being carried out by Sessile Construction and the family are staying at Swiss Farm in Henley during this time.

They previously lived in Henley before moving to Sonning Common in 2018.

Mr Clarke said: “It has taken us a long time to find the right builder to do Ben’s Big Build.

“The frustration of not being able to find a builder to simply provide a quote or getting ridiculous quotes was exacerbated when the cost of all things skyrocketed at the start of the Ukraine war.

“Over three years, we reached out to more than 15 contractors and received four quotes, which ranged from the sublime to the absolutely ridiculous.

“Through a personal recommendation, we are so happy to have now found a builder who has worked with us to understand the project, quoted at a competitive rate and been flexible to our needs.

“I cannot express how thankful we are to Jamie and Hollie, from Sessile Construction, of Maidenhead.

“From day one of speaking to Jamie, we really felt he listened to us and had a genuine interest in helping us realise the dream of adapting our home for Ben’s needs and making it an accessible forever home.

“Nothing is a problem and he has or will find a solution to all challenges.

“As a family, we are so excited to now be on the way to having this project completed and be in our home.

“Ben will have a bedroom and wet room that is accessible and meets his needs and the remainder of our house will be accessible for him when the time comes for him to be in a wheelchair full-time.

“We’re incredibly happy to have the right builder. More than anything we’re relieved. It’s also quite exciting to know that in a short space of time we’ll be able to move back into our house. We’re hoping to be back in for summer.”

Ben has been sharing a room with his brother and both boys are excited about getting their own rooms.

Mr Clarke said: “Ben is incredibly excited about getting his own space but there’s also a bit of sadness that he’s losing the house we bought a few years ago and because of the changes needing to be made for him.”

Jamie Day, director of the construction company, said: “They approached us in the middle of last year and my initial thought was that I definitely wanted to be involved because it’s going to be really good for their son.

“I was surprised to hear that it had been difficult for them to find a company because I would have thought that any decent builder would want to help out.

“We’ve done lots of house renovations but never for the reasons they’ve got. It’s a very nice feeling to have been chosen for the project. I love my job but this one is particularly enjoyable because you know how much it will benefit the family and Ben.

“Work is underway. We have the extension up and we’ve been knocking through the house, opening up the downstairs to make it much more accessible.

“We’re thinking on our feet as we’re able to adapt and change things.”

Interior designer Hannah Dean, of Hamilton Avenue, Henley, volunteered her services.

Mr Clarke said: “Hannah has had a massive impact on the layout. She has basically created a much more welcoming finish, which is really going to be beneficial. She has been incredible.”

Mrs Dean, who lives with her husband and children, Charlotte, 11, and Alexandre, nine, said: “It was just before lockdown that I saw on social media the family were putting on their gala ball and looking to raise money for renovations.

“I considered putting in a two-hour consultation, which is something I offer normally, but then I thought, ‘Actually, I want to properly help them with transforming the house’. I offered my services and said, ‘I can do as much as you like’.

“It was a good time to get involved because we moved the small kitchen so now it’s a big kitchen and dining area they can use as a family.

“Since then, I’ve been helping with flooring choices, kitchen layout, all the wall colours, layouts of furniture.

“Two weeks ago, we chose the bathroom layout for Ben — the tiles, the colour — to make it really nice for him.

“I met Ben for the first time when we were doing the final bits for the bathroom so I got to have a cuddle, which was really nice. He’s just so gorgeous and such a squidge.

“It has been a real pleasure knowing I’m helping in some way. It really puts everything into perspective.”

Duchenne muscular dystrophy is one of the most common genetic disorders in children and usually only affects boys. Most children with it are not expected to live beyond their early twenties.

Ben does not yet permanently need a wheelchair but uses one for travelling long distances because he gets tired easily.

Mr Clarke said: “He’s still doing well. We are starting to see a decline in his ability to keep moving for longer. He’s struggling more with climbing stairs and he’s starting to find it difficult to stand up from the floor.

“In the grand scheme of things, he’s doing well but we are noticing change and the loss of core skills.”

The Clarkes founded Ben versus Duchenne to raise awareness about the condition and have been fundraising for the building work and an electric wheelchair since 2018.

Sponsored walks with friends and a black-tie ball in 2020 raised £42,000 and shops and organisations in and around Henley have also raised money.

Mr Clarke, who works as an operations manager, said: “None of this could have happened without the amazing community that has supported Ben vs Duchenne over the last five years since Ben was diagnosed.

“To every single one of you who has donated to any fundraiser, thank you — you have made a difference to Ben’s life and to our family.

“Ben’s school community have awareness now through the different articles in the Henley Standard and campaigns we’ve run. A number of people exposed to Duchenne reached out and thanked us for raising awareness.

“We did a poll on Ben’s Instagram to find out what people wanted — more family stuff or information.

“The overriding feeling was that people wanted to know about the condition and how we have to adapt in our lives on a daily basis while trying to keep it as normal as possible.

“We have taught Ben that although he has this condition, life goes on as normally as possible and he can do what he chooses to do.”

For more information, visit www.benvsduchenne.com