Family's heartbreak as son loses ability to walk after Covid

Paul and Steph Brooks have been fundraising for adaptations to their garden in Thurston, west Suffolk, to improve the quality of life of son Jake, 11, who suffers with the debilitating condition mitochondrial disease.

The project to make the garden more accessible, including a building to house a hot tub for all-year-round use, would also benefit Steph, 36, who has the same disease as Jake, but is not affected in exactly the same way.

However, since testing positive for Covid earlier this year he has been unable to walk unaided, and his parents have now received the devastating news from his local consultant in June that it is unlikely he will ever regain the ability to walk on his own.

Steph and Paul Brooks have been fundraising for a building to house a hot tub, which will benefit both Steph and Jake, and resurfacing the garden. (Image: Sarah Lucy Brown)

Steph said this had dashed their hopes of Jake's walking ability improving in the future and had been "horribly hard for us as parents to take".

She said: "Jake had Covid back in April and Paul then had to take over looking after Jake. I have mitochondrial disease as well so we didn't want me to catch it. Jake then passed it onto Paul.

"That was really hard and has stopped Jake from being able to walk independently. It's also really impaired his speech as well."

Mitochondrial disease also means Jake, a pupil at Riverwalk School in Bury St Edmunds, has a weak core, wobbliness, lack of co-ordination, severe learning difficulties and very low energy.

Currently, Jake can use his walker, but his knees buckle, and so he mostly crawls to get about. When out and about he uses a wheelchair.

"The hot tub is more important than ever - getting that hydrotherapy and exercise in the water. It's also a source of freedom for Jake. He will move freely in the water and it's soothing for him," said Steph.

Steph, who also has mitochondrial disease, is having her head shaved to raise awareness and funds into research. (Image: Sarah Lucy Brown)

The groundworks are now complete for the garden project including the artificial grass, which means Jake can spend more time outside instead of just looking at the space through the window.

Steph added: "Jake has used the garden so much in the last week, more than he has in the past couple of years. It's so lovely to see him out there smiling and laughing and crawling around the dog. It's just beautiful."

The family are hoping Jake, who is nearly 12, can have the Covid vaccine. (Image: Sarah Lucy Brown)

The hot tub building will start to go up next week, but this part of the project has been scaled back due to the high estimated cost.

The structure will now be a two-sided open building, which Paul will add doors to for the winter, rather than an extension.

"We are actually happier with what we are doing now than the original plan," Steph said. "If we had gone with the old plan there was no way it would be done this year and we wanted it to be done quickly so Jake would benefit from it sooner."

The family will soon meet with their son's specialist and want to see if Jake, who is nearly 12, can have the Covid vaccine to reduce the risk of him contracting it again.

Steph is double vaccinated, but spoke of how scared she feels about catching coronavirus.

"I'm terrified," she said. "People with pre-existing conditions and vulnerable people have been forgotten quite a lot through all of this."

To raise awareness of mitochondrial disease and cash for research she is having her head shaved at Dapper Dean's barber shop in Thurston on Saturday, September 25 - the end of Mitochondrial Disease Awareness Week.

To donate visit the mitochondrial disease fundraising page here.

The garden project is now coming in at less than £20,000 and, as well as giving donations, people have also been generous with their time, including local workmen who came over to help move the hot tub.

To donate visit the JustGiving page.