Crowdfunder aims to create memories for Buxton boy with rare genetic condition before he goes blind

A community fundraising campaign got under way this week to help create memories which will last a lifetime for a young Buxton boy with a rare genetic disorder which will some day leave him totally blind.

By Ed Dingwall
Friday, 20th May 2022, 5:13 pm

Six-year-old Theo Roberts has multiple health problems and developmental delays caused by Bardet–Biedl syndrome, which affects about one in 100,000 people in the UK.

While he has been in and out of hospital and specialist therapies throughout his life, in most other respects he is like every boy his age, full of big ideas, dreams and obsessions.

So when mum Laura Roberts, 28, asked him if there was anything special he would like to do before he loses his already impaired sight – which could happen at any time – Theo had plenty of suggestions, and his litany of life goals has now captured the public imagination.

Theo Roberts at his school

So far well-wishers have donated more than £2,000 to make Theo’s fantasies a reality. Among the first to donate was Burbage Primary School headteacher Anthony Tierney, whose staff have always gone above and beyond to get Theo the support he needs.

Mr Tierney said: “As a school, we are delighted to be able to support the fundraising campaign. I hope he is able to have as many exciting and positive experiences as possible via the generous donations. He is a kind and popular member of our school community and has a delightful character. Please donate if you are able.”

For Laura, who works in the Corner Cupboard sandwich shop on High Street, the flood of goodwill is taking some getting used to.

She said: “We want to make him as aware as possible without upsetting him. Last week his dad, Jack, and I asked Theo to come up with this list just as a light-hearted way to think about the future. He’s got such a good sense of humour. His first thought was that he wanted to see the inside of a prison cell.”

Theo’s ‘bucket list’ also included watching a basketball game in America, swimming with dolphins, a trip to Disneyworld, meeting world heavyweight boxing champion Tyson Fury and Manchester City football star Phil Foden, having a bouncy castle in the garden, meeting Santa Claus, and travelling to Australia to visit his beloved grandad John, who he has not seen since the pandemic began.

Laura said: “It was such a funny list that I shared it with our friends and family on Facebook, people who know Theo. He already has a little sister, Essie, but one of the things he insisted on was a baby brother. Someone said I could just pop out to Tesco and get one.

“Then people started messaging me saying I should make it a serious thing, and that they would love to contribute. I said no to them all, I was adamant. I didn’t want people prying into our family life, or questioning whether Theo deserves it. I know there are lots of sick children who will never get opportunities to do these things.”

Despite Laura’s protests however, one of Jack’s cousins, Sophie Hallworth, took it upon herself to launch a crowdfunding page, and within hours the donations started pouring in along with offers of help to tick off particular items on the list.

Laura said: “I still feel very unsure about the whole thing but it’s been really nice to see the response. There have been a few negative comments but we’ve been overwhelmed by messages of support.

“We’d like to thank everyone for their kindness and generosity, especially the school. They’ve been amazing from the day he started and done everything to accommodate Theo’s needs. His teaching assistant Sarah is like another mum to him.”

When he was diagnosed in 2017, Theo’s doctors said he might never be able to walk and talk. Although his development has been slower than some of his schoolfriends, he has upended those early expectations.

Still, his condition leaves him feeling constantly hungry, at risk of kidney failure, and struggling with asthma, fatigue and attention deficit hyperactivity disorder. Theo is also currently undergoing assessment for an autism spectrum disorder, but it is his sight loss that weighs heaviest on Laura’s mind.

She said: “I really struggle with it some days. It’s the bit that upsets me the most. I can cope with everything but that. The fact he won't be able to see breaks my heart.

“He has rod-cone dystrophy which already means he doesn’t have much peripheral vision, struggles to adjust between bright and dim light, and he has to use a cane. We don’t know if he ever had full sight but it’s definitely deteriorated in the last few years.

She added: “Theo doesn’t always understand what makes him different. When he goes to Buxton Riding for the Disabled, he asks why his friends don’t come. We try to tell him he’s lucky he gets to do these things.

“We have a family friend, Uncle Josh, who lost his sight in an accident. He teaches Theo jiu-jitsu now and that’s really helped him to understand being blind, but he still talks about the cars he wants to drive when he grows up.”

“With his kidneys, it’s a huge serious operation but he could have my kidney tomorrow. With his eyes there's nothing they can do. If I could give him mine I would.”

Work is already under way to tick off some of Theo’s simpler ambitions – local company Stu’s Castles set up an inflatable in the garden over the weekend – but the family will take their time with some of the bigger items.

Laura said: “We’ll see where the budget goes and weigh that up, but all the money will go on Theo. It would mean the world to him to do some of these things. He’d never expect it to become real. He’d be well chuffed.”

To add to the fundraising total, go to www.gofundme.com/f/donate-to-help-theo-roberts.

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