Public appeal from Bingham mother to help build accessible living space for disabled daughter in home organised DIY SOS

A mother has appealed for the public’s help in building a downstairs bedroom for her disabled daughter.

Helen Mathers needs to raise £40,000 to cover the cost of the much-needed bedroom and wet room.

At present, Libby has to sleep in the living room because she can no longer get upstairs.

It is believed she has a condition that affects only five other children in the world, as well as cerebral palsy, epilepsy, and global development delay.

“Over the last four years her health has really deteriorated,” said Helen.

“She used to be able to run, jump and walk. Her movements were stiff and robotic but she was mobile.

“But she started to become much more unbalanced and in the last year and now can’t walk at all, there’s days where she can’t even sit up.”

Living in council housing on Carnarvon Place, Bingham, the Mathers are eligible for a £30,000 disabled facilities grant from Rushcliffe Borough Council towards the cost.

But the quote for the extension was estimated at £70,000, leaving the single-mum of two to foot the rest.

“Even if we could get her to her bedroom, it’s a normal bathroom so I can’t put her in the bath or shower her. She needs a lay-down bed in a wet room and until we have one she’s having to be bed-bathed,” said Helen.

Libby had MRIs and blood tests to diagnose what was wrong, before eventually being sent to the genetics clinic, where an abnormality was found in one of her genes.

“Initially they thought it wasn’t the problem as it was something that had only been linked to a genetic condition in adults but in June we were told that they were looking into it as it had presented itself in children,” said Helen.

“There are only five children in the world with this condition and they think Libby could be the sixth child. It’s something rare, it’s something unknown, we don’t even have a proper name for her condition yet."

“I’ve had the genetics team look at her, I’ve had neurology, I’ve had neurosurgery, all these different departments and they’re all at a loss as to what’s going on. There are over 120,000 different chromosomes so you can imagine how many genetic conditions haven’t been discovered yet."

With it being a new condition there’s no prognosis, history, comparisons, the future is unknown.

“It’s hard because we’re facing a massive challenge trying to find out what’s wrong with her and then on top of that told I need to raise all this money to even shower my daughter,” Helen said.

“I don’t know if whatever it is could have been stopped, but she’s going downhill every day and I feel like it’s a race against time to try and find out what’s wrong.”

In the meantime, the family want to make life more comfortable for Libby.

The family could install a lift from the living room into the larger bedroom above.

However, Helen said she also had a son who has been pre-diagnosed with autism and ADHD and so needs an area to get away from everything.

“If we gave him the box room it would leave him with no floorspace, no room to play,” Helen said.

“It’s all well and good the council saying the budget covers the cheaper option, but at the end of the day it’s going to cost more for the extension, but then both my children get what they need.

“Even if they went for the cheaper option they’d have to turn part of the downstairs into a wetroom anyway, so It makes sense for her to have her own space on the same level as me if something was to go wrong. It’s a safer option, a more sensible option and a better option for everyone if we have this extension and wet room."

With little options as to how she could raise the money, Helen turned to the generosity of the public by setting up a GoFundMe page. You can donate HERE.

One person has already made a £1,000 donation and another has offered to do electrical work for free.

“Once planning permission is complete in around six to seven months we are thinking of appealing for volunteers to reduce the cost ­— a kind of home-organised DIY SOS.”

Helen is looking for charities or organisations that can help sponsor the build but says it’s about much more than that.

She said: “It’s not just about raising the money, it’s also about raising awareness. Because if someone had come forward even a few years ago with a child that was presenting symptoms like Libby I could have gone to the experts sooner.”