Coronavirus would be life-threatening for either of Karen’s two young daughters, who both have cerebral palsy.
Nix, 12, is fed through a tube, is blind, suffers seizures, has bladder and bowel problems and experiences severe chronic pain. She’s just returned from hospital with pneumonia.
Addy, nine, has a neurological disorder and also uses a wheelchair.
At the moment, the girls’ usual agency carers are self-isolating, and their carers from the local hospice, Noah’s Ark in London, aren’t able to visit in case they expose the girls to the virus.
Karen is caring for her daughters single-handed – just one of millions of families with disabled people left struggling behind closed doors.
“We are relying on our neighbours and volunteers to get us food supplies as we’re struggling to get a supermarket food delivery date,” Karen says.
“This is full-on, I am tired, I am running on adrenaline and chocolate. It is physically and emotionally exhausting because the girls can’t do anything for themselves.
"I dread to think what would happen if any of us contracted Covid-19.”
While this time is tough for many of us, those who were struggling most before the virus are struggling most now.
Meanwhile, in a doubly cruel blow, the services that support families like Karen’s are also being attacked by the disease.
Karen normally relies on Noah’s Ark to be literally that – a lifeboat that keeps the family afloat by providing much-needed respite care.
The hospice helps 327 seriously unwell children and their families make the most of the special time they have together.
Volunteers are currently providing emergency support to Karen’s family.
Now, Noah’s Ark is facing a fight for its future – with an income shortfall of more than £2million this year, over half of its projected remuneration.
“We are all worried about coronavirus,” says Sophie Andrews OBE, the chief executive of Noah’s Ark. “But imagine if your son or daughter was seriously unwell.
"The threat of coronavirus is desperate and immediate for those we support. It is life-threatening for every single one.
“We’re concerned about how we’re going to support these children through coronavirus and beyond.
"Our community has been a bastion of generosity in the past and we’re once again calling on them to rally around for their local children’s hospice.”
The family is also supported by Haven’s House, which warns that “we face a dramatic drop in our income and we expect to lose more than £500,000 in the next three months alone”.
Real Britain reported in January on the end-of-life care crisis affecting hospices across the country.
Before coronavirus, Hospices UK said the system was “broken” with experts estimating hospices were “propping up the NHS to the tune of £1billion in care” every year.
That billion pounds in charity fundraising has now collapsed, with hospices warning they could face closure within months unless the Government steps in.
Covid-19 has closed the charity shops and ended events like the London Marathon that the hospice movement relies on.
“Outside the NHS, charities, including children’s hospices, are the bedrock of children’s palliative care,” Andy Fletcher, chief executive of Together for Short Lives, says.
“They provide lifeline palliative care to the UK’s most vulnerable and seriously ill children and families. However, they are facing a huge financial crisis because of coronavirus.
Their cashflow is now under massive pressure as regular income from charity shops and generous communities grinds to a halt.
Whilst keen to help take pressure off hospitals and be part of the coronavirus effort, they will not have the cash to do so.
We are working with Government and emphasising the need to act urgently.”
For Karen, the thought of losing Noah’s Ark and Haven House is adding to the stress, hard graft and worry involved in keeping her girls safe.
“I can’t imagine what would happen if Noah’s Ark Hospice were not around,” she says. “We have been with the hospice for 10 years.
"We were one of the first families to have a respite stay there as a family after Nix came out of hospital, which was a very traumatising time for us. Sometimes carers come with us for days out, it allows me to take the children out.”
As Andy Fletcher says: “Every day more families are telling us they are feeling scared, anxious, worried and very alone, not knowing what they can do to keep their child safe.
"And many families are juggling new practical challenges of getting vital medicines, medical supplies, food and equipment that their child’s life depends on.
“That’s why we must step up and ensure that children’s hospice services, condition- specific charities and those providing social care at home are still there when this crisis is over.
"Because it is unthinkable to imagine how children and families will cope without them.”
To donate to Noah's Ark Hospice Coronavirus appeal please visit, www.noahsarkhospice.org.uk/coronavirus.
