Plymouth boy with ultra-rare condition that means he can't speak is on a £300k mission

Arthur Manners is spearheading the Arthur's Too Pool for School campaign to revamp the outdoor swimming pool at Elburton Primary School, Plymouth -Credit:Submitted
Arthur Manners is spearheading the Arthur's Too Pool for School campaign to revamp the outdoor swimming pool at Elburton Primary School, Plymouth -Credit:Submitted


A Plymouth boy with an extremely rare health condition that means he can’t speak is spearheading a campaign to raise £300,000 and overhaul a school swimming pool. Little Arthur Manners, aged eight, is the face of the Arthur’s Too Pool for School campaign which wants to revamp the outdoor swimming pool at Elburton Primary School, in Plymstock.

The 1970s outdoor pool is unheated and in need of a complete overhaul but the Leaning Academies Trust, which the school belongs to, says it can’t afford the work. It is, however, backing the fundraising effort begun by Arthur and his mum Emily Stevens-White.

Arthur has the ultra-rare ETBP1 haploinsufficiency disorder, a genetic condition thought to affect only one in 100million people. Only about 45 people have been described as having the condition in scientific literature and Emily said her son was just the second person in the UK to be diagnosed with the condition.

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Arthur loves to splash in a pool and finds it helps his condition. So he and his mum are aiming to raise £300,000 via a Gofundme appeal, and have gotten off to a great start, with £1,600 from the first 79 donations.

Emily said: “We want to completely renovate the swimming pool. It was built in the 1970s, has no heater and the filtration system is not up to scratch. Children get to use it only two or three days a year. It needs a complete overhaul, a new liner, filtration system, heater and a cover.

“The school was looking at whether to fill it in. But we want to get it looking nice and usable for the community for a longer part of the year. It needs about £300,000. It’s very much our fundraiser, not the school’s, we are grateful for anything we can raise.

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“We want this to be done as soon as possible,” she added. “Arthur is already in Year 3. If we can raise the money over the next year that would be incredible, but we are under no illusions - it’s a lot of money. We’d like businesses to get on board and give support.”

Arthur only got his diagnosis a year ago. Emily said: “For Arthur it means stage two kidney disease, ureteric reflux, dyspraxia, ADHD, neurodevelopmental problems and more. Most frustratingly for Arthur it means he cannot speak, so there is a lot of frustration there

“He’s had a rocky start to his life, we spent his first years living in Derriford Hospital,” she added. “But he’s a great kid, so sociable. Swimming is really good for him to build his core strength and create muscle memory. It’s invaluable to Arthur and many other children, there are a lot of children that haven’t got the opportunity to go swimming.”

She said: “Arthur finds so much freedom from being in the water and not only is it great for developing his balance, strength, coordination and endurance, it’s invaluable to his self esteem. In the pool he can have fun with his friends and improve social skills in a relaxed and fun environment.”

Arthur is the eldest of Emily’s two sons at Elburton Primary School. Their two-year-old brother is likely to become a pupil in a few years time too, and Emily said Arthur loves going to the school.

She said: “Arthur doesn’t fit into a box and so whilst it is fair to say that he struggles a great deal in mainstream school, there is equally nowhere else currently better suited for him. Arthur’s school has been a lifeline since he started four years ago and without their support life would have been a great deal tougher.

“Arthur’s headmaster, his amazing one-to-one help and his kind and supportive teachers all go above and beyond to make it work each and every day. It would mean everything and have such a huge impact if their school pool was something they could be proud to share with the wider community including other local schools.”

The Learning Academies Trust said: “During the warmer summer months, the swimming pool at Elburton Primary School provides a brilliant opportunity for children to get active and learn to swim. Whilst we would love to carry out refurbishments to improve and heat the pool, unfortunately the cost is simply too great. As a trust, we are fully supportive of the fundraiser that has been set up and would like to thank everyone who has donated so far.”

The Too Pool for School campaign can be found here.