'Bucket list' walk over hot ashes to help Jake, 12, have full access to garden
- 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.
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 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.
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.
- 1 'Lads have different levels of where they are' - Cook on Norwood and Barry
- 2 East Suffolk Council to form new company to deliver services after Norse contract ends
- 3 Paul Cook on social media 'drama queens' and a trip to Gateshead
- 4 'I absolutely hate it' - Pigott on 'massively frustrating' start to life at Town
- 5 'The answer to your question is in my reply' - Cook on whether he'll go with Bonne or Pigott
- 6 Parish council concerned about plans for new A14 service station
- 7 Burglar jailed for break-in at Stowmarket dental practice
- 8 Child rapist jailed for offences dating back to 2005
- 9 'It's a genuine personnel issue' - Cook on goal errors
- 10 Time Team using latest technology to investigate Sutton Hoo
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."
"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.