'Bucket list' walk over hot ashes to help Jake, 12, have full access to garden

Steph and Paul Brooks are fundraising to make their garden accessible for their son Jake, 11, who su

Steph and Paul Brooks have been fundraising to make their garden accessible for their son Jake, now 12, who suffers from mitochondrial disease, which is a debilitating condition - Credit: Sarah Lucy Brown

A family who are striving to complete a garden project to improve the quality of life of their son are hoping a firewalk will take them over the line. 

The Brooks family are adapting the garden of their Thurston home so Jake, 12, can enjoy spending time outside, including using the hot tub all year round.

Hydrotherapy benefits Jake who is living with mitochondrial disease, a progressive illness that affects his movement and energy levels, and he also has severe learning difficulties. 

The project will also benefit Jake's mum Steph who also has mitochondrial disease, but is not affected in exactly the same way; she suffers with poor balance, night blindness and widespread chronic pain as well as low energy.

Steph and Paul Brooks with son Jake before the work started

Steph and Paul Brooks with son Jake before the work started - Credit: Sarah Lucy Brown

Steph and husband Paul have been trying to raise thousands of pounds to fund improvements including a building to house the hot tub and resurfacing the garden.

The hoist for the hot tub is now the final element they need, and the £3,500 piece of equipment will mean Jake can get in and out of the water safely.

A fundraising firewalk, organised with the Charlie Gard Foundation, is being held tomorrow, November 13, at the Fox and Hounds Pub in Thurston.

The firewalk is taking place in Thurston on November 13 at the Fox and Hounds Pub

The firewalk is taking place in Thurston on November 13 at the Fox and Hounds Pub - Credit: Supplied

Stephanie Roundsmith, of the Charlie Gard Foundation, which is supporting the family with the garden project, said walking on the hot ashes was a "great experience" and a "bucket list" activity.

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She said the event, which is being delivered by UK Firewalk, was "100% safe".

In terms of its purpose, she said: "It might seem like it's just a hoist, but for them it means everything. It means they have full access to their outdoor area."

Paul described the garden project as "very important".

"As soon as the grass was done Jake was in the garden every day. Before he wouldn't have been in the garden. The hoist is the last big thing."

A recent picture of the improved garden at the family's home. The hoist is the last major item needed

A recent picture of the improved garden at the family's home. The hoist is the last major item needed - Credit: Paul Brooks

Jake, a pupil at Riverwalk School in Bury St Edmunds, used to have some independent walking ability, but after contracting Covid earlier this year he needs to use his walker or chooses to crawl.

"We had an appointment in Oxford with his specialist and they confirmed it probably wouldn't get much better," Paul said.

It is now more important than ever for Jake to access hydrotherapy and exercise in the water.

Paul said they had raised about £12,000 for the garden project, adding he had got the fundraising "bug".

He has taken part in the virtual London marathon by running around his village, had his back and chest waxed and his head shaved.

Steph also had her head shaved in September to raise money for the My Mito Mission charity.

They are encouraging people to take part in the firewalk, which costs £10 to sign up and participants must raise a minimum of £50 in sponsorship.

Registration opens at the event at 2.30pm and training begins at 3.15pm. People can just turn up on the day or sign up here.

Paul said the The Lily Foundation, which is a mitochondrial disease charity, had also pledged funding towards the hoist.



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