Mother and son diagnosed with severe illnesses dream of accessible garden
- Credit: Sarah Lucy Brown
A close-knit family who have been on a "rollercoaster" after both son and mum were diagnosed with a life-limiting illness are trying to realise the dream of an accessible garden.
The Brooks family from Thurston, near Bury St Edmunds, found out son Jake had mitochondrial disease seven years ago, and later mum Steph was found to have it too.
Mitochondrial disease is a progressive, life-limiting illness that affects multiple systems within the body and there is currently no cure.
It doesn't affect Jake, 11, and Steph, 35, in exactly the same way; Jake has a weak core, wobbliness and lack of co-ordination and can't walk far, severe learning difficulties and very low energy and Steph has low energy, poor balance, night blindness and widespread chronic pain.
Couple Steph and Paul are trying to raise £30-50,000 for a building to house a hot tub for son Jake, with a hoist, so he can use it all year-round for hydrotherapy and to pay for resurfacing the garden to make it more accessible.
Steph, who would also benefit from the hot tub project, said achieving it would "mean the absolute world to us".
She said: "The last seven-and-a-half-years have been a complete rollercoaster.
"I broke my leg in 2013 - three days before Paul's 30th birthday and I had surgery on his 30th birthday.
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"That year Jake had to have a CT scan, an MRI scan and lumbar puncture all under sedation, and I broke my leg, all in that same year.
"I actually got Jake's partial diagnosis on my birthday that year. That was by far the hardest year I have ever had.
"And then we got his full diagnosis the following January. I was then told I should get tested as it can be maternally inherited and I had my diagnosis in the May.
"Ever since then our life has been one great rollercoaster. This whole time Paul has been my absolute rock. Everything we go through makes us so much stronger."
Steph added: "Paul has to do the majority of the stuff with Jake and I will always feel guilty about that. He's a star and he gets on with it and he does it."
Paul, 36, is taking on challenges to fundraise for the garden project, including a chest and back wax on Saturday, June 5, and the Virtual London Marathon in October, which must be completed within 24 hours.
He said: "The furthest I have run before was 10K and that was four years ago and I have missed out on the last month of training."
Catching Covid has put back Paul's training, but he is recovering.
He said Jake "loves" being outside, so there will be huge benefits of resurfacing the garden with artificial grass. Currently the garden is largely inaccessible for Jake without him being carried.
"We have got a little dog and he loves to play with the dog, but the dog wants to go outside and Jake cannot do that", said Paul, who works full-time in IT.
"Sometimes we can see Jake looking outside and he wants to go outside doing stuff but he gets scared and anxious and worries about falling over."
He said due to his learning difficulties Jake is more akin to a five or six year old.
The Charlie Gard Foundation, one of the UK’s leading charities dedicated to fighting mitochondrial disease, is also helping with the fundraising and supporting managing the garden project.
Stephanie Roundsmith, from the Charlie Gard Foundation, said: "It's very nice to support a project that will change the lives of all of them really."
Paul's employer, Killik & Co, has pledged £10,000, he said.
Paul said he would be building an outdoor kitchen and barbecue area himself, adding Jake loves cooking with him.
The family already have a hot tub, but it is outside so use is weather dependent.
Steph and Jake also have a charity page where they talk about their experiences of having mitochondrial disease.
Steph said there "absolutely" needed to be more awareness of the condition.