Parents of three-year-old with rare muscle disease say 'time is running out' for safe home

The family of a little girl living with spinal muscular atrophy say they’re facing a £7,000 bill after claiming Glasgow City Council “refused to help” them with adaptations.

The parents of three-year-old Grayce Pearson are attempting to raise enough for a stair lift and a wheelchair-accessible ramp.

But what they need is a long-term solution – a house fully adapted to meet the little girl’s needs.

SMA is a genetic neuromuscular disease that causes progressive muscle weakness. It means Grayce might never get to walk, and has caused a host of other health challenges in her short life.

The family live in a four-in-a-block style tenement accessible a narrow set of internal stairs, and a small external staircase.

Getting Grayce out of the house is usually a team effort, mum Carrie told STV News.

“One of us will have to take Grace separately and the other one will then have to take her bag, her wheelchair,” she said.

“We’ve got like seven or eight steps on the top part. Then another seven or eight steps, and then four external stairs. The stair lift and the ramp would ease some of that just now, until we can get suitable accommodation.”

Grayce was diagnosed with SMA at 14 months. Her parents did not know what the condition was and have been fighting for her right to a normal life ever since.

In March of this year, their campaigning efforts helped get testing for SMA added to newborn screenings here in Scotland.

Getting Grayce out of the house is usually a team effort. STV News

The Pearsons say Glasgow City Council have rejected requests for adaptations to their home.

In documents seen by STV News, the council says a stair lift wouldn’t be suitable as Grayce cannot transfer herself into or out of it without help.

Alongside this, the entry to their house was also deemed unsuitable for a ramp due to the surrounding garden being too narrow.

Tony and Carrie Pearson, Grayce's parents — Tony and Carrie Pearson, Grayce’s parents STV News

But Tony and Carrie don’t see an alternative to funding these adaptations themselves, adding that offers of alternative accommodation haven’t been suitable.

“Obviously right now we’re able to carry her. That’s going to change as she gets bigger and heavier, it’s going to become a struggle,” Carrie said.

Grayce’s dad, Tony, added: “We’re going through IVF in August. So if I’m at work, how does my wife get two children out of the house with Grayce and her wheelchair?

“And it’s not just getting her out – it’s things like using the toilet. When Grayce gets bigger, how does she get in and out of the bath? If we don’t get her down the stairs, is Grace going to have to resort to bumping herself down?

“She needs her independence. She needs to be able to do things for herself as she gets older.”

Glasgow City Council said in a statement they’ll continue to work with the family to find solutions – but that their refusal to “accept recommendations from professional assessment” has limited the council’s social work role.

The family have been offered an option for accommodation, but found it to be unsuitable as it was a two-bedroom flat in a tower block.

Carrie said: “That’s not good for her. Even if we were to accept, lifts break down – are they going to come and carry Grayce down the stairs for us?

“They want Grayce to have a house that’s already fully adapted for her, just to go in and it be done – but we’ve been told there’s an eight to ten year waiting list.”

“We’re struggling and we are literally running out of time to get Grace a house that’s adaptable for her,” Tony said.

“I feel that as her parents, we are failing her. We’re just trying to make sure her life is as independent as possible.”

The family are currently looking to raise the £7,000 it will cost to fit a stair lift and wheelchair-accessible ramp into their current house.

But as Grayce grows, so will her needs – parents don’t know where the money to accommodate those will come from.

“We’ve never expected handouts from anybody,” Carrie said.

“We’ve just expected what she’s entitled to. She’s entitled to have a safe environment, a home where she’s safe.”

You can view the fundraiser for Grayce here.