At the top of a flight of stairs in east London, one-year-old Sophia moves around the front room in a small, pink wheelchair. In some ways, she’s like any other toddler: her mum and dad, Victoria and Gennadiy, are teaching her the alphabet, colours and animals, and she’s proudly learned how to use an iPad. “Not as proficient as an adult, but better than her grandmother,” Gennadiy tells me.
But Sophia’s disability, spinal muscular atrophy type 1, is brutal – in 95% of cases it has a life expectancy below two – and the two-bed flat is full of signs that all is not well. There’s a blanket on the floor where Sophia lays for her exercises and a specialist play chair to prevent her spine from curving. The second bedroom is packed with kit – a standing frame, splints, another specialist chair – so all three of them share one room to sleep in.
Because only some of the equipment Sophia needs is available on the NHS – the spinal jacket and the splint – Victoria and Gennadiy have had to find the money for the rest: £2,000 for the standing frame; £700 for a feeding chair. The NHS had a six-month waiting list for one suitable seat. “Who knows where we’ll be in six months?” Victoria says.
Sophia’s wheelchair had to be paid for out of their own pockets too: another £700. NHS wheelchair services told them they weren’t eligible for help because they live on the first floor – but there is no lift. “We have to carry Sophia’s equipment up the stairs,” Gennadiy explains. And because the council has put them on the lowest band on the housing waiting list, they’re not eligible for an accessible flat either.
Buying somewhere isn’t an option. Before Sophia was born, both Victoria and Gennadiy had good jobs – Victoria at a university library and Gennadiy in a senior sales position – but with Sophia too unwell to be safe at a nursery, now every day is run on “a timetable”: one of them at work to pay the bills and another at home to take care of Sophia.
In January, Gennadiy was made redundant and while Victoria had to go back to work full-time, Gennadiy applied for carer’s allowance. “We were desperate for something to tide us over,” he says. “But because I was caring for Sophia, I wasn’t eligible for jobseeker’s allowance.”
Victoria stresses they are “lucky” – they have friends and her parents nearby to help – but ask her if she ever gets a rest and she admits: “It’s just the two of us. My dad’s 70. Caring for Sophia … it’s too physical. Gennadiy’s family in the Ukraine are great to make Sophia laugh on Skype but they can’t be here for an emergency at 3am.”
Looking after a child such as Sophia is, in Victoria’s words, “constant”: it is impossible to go into another room for a minute as she might slip in her chair. The council, Victoria says, has offered them no help. The family is currently being assessed for respite care but Gennadiy has little hope they’ll get it. “They’re quite stretched. I think Sophia would need to be on a ventilator to be eligible.”
Last month it emerged that parents of disabled children are finding it increasingly hard to access specialist local council help, leaving them without personal assistants, overnight support services and respite care. But listen to Victoria and Gennadiy and what stands out is that that’s only one part of the picture: from a squeezed NHS, a lack of accessible housing, to the flawed benefit system.
Even accessing something as essential as Sophia’s physiotherapy is a struggle. When Gennadiy was made redundant, he lost his company car and with it the only way to get Sophia to her hospital and physio appointments. Public transport is impossible because of the risk of germs to Sophia but as she’s under three, benefit rules mean Sophia’s parents aren’t eligible for the scheme that lets them swap benefits for an accessible car. “Not going to physio will kill her, going on a bus will kill her. What do we do?” Gennadiy says. They ended up borrowing money to buy a car.
To give her body a chance of staying well, Sophia needs these physio sessions every couple of days but the NHS only offers one appointment every six weeks so Gennadiy and Victoria fund the rest at £70 to £100 each time. To find the money for it all, they use a desperate method: Gennadiy puts what Sophia needs on a credit card, gets a loan to pay off the bill, then runs up the card again. The family is £30,000 in debt and Gennadiy worries that Sophia’s medical equipment will be repossessed. “They don’t care what they take, do they? They just take it … I’d say it keeps me awake at night but Sophia likes to sleep in our bed so she’s the one giving us sleepless nights.”
This week, they are taking Sophia to Paris for treatment that’s not available on the NHS. The hope is it will help to save her life but it costs £3,000 a go. The family can’t even rely on benefits for some extra help: because Gennadiy found a new job this month, he’s no longer eligible for carer’s allowance.
“It’s overwhelming,” he says. “On top of keeping our daughter alive, we have to fight for some social support.”
- Sophia’s parents have set up this crowdfunding page to help with funding https://www.gofundme.com/sophiass-fund
