‘We just want to give our child a good death’ – the family battling grief and a mountain of debt

Sophie Lewis knows one day she will face the most devastating moment for any parent – her daughter will die.

But when Isabel is gone the family will be left with not just overwhelming grief – but also a mountain of debt.

Isabel has Batten disease, a fatal disease attacking her nervous system. Children have a life expectancy of up to ten years. She is now 12.

But while the mum-of-four should be caring for her child, she is also fighting another battle: the rising cost of living.

“All we have ever done is fight – you fight for everything, but you don’t want to because that word ‘fight’ feels quite gross,” she told Sky News.

“Really what you are trying to do is give your child a good death and give them a good quality of life and comfort in the meantime.”

The Lewis family runs a “mini-intensive care unit” for Isabel, who now requires two-to-one care around the clock.

Three years ago, at the same time of year, it cost them £4.60 a day. This has now risen to £16.06, and the family has no idea how it is going to pay its soaring bills.

Ms Lewis, from Guildford, said: “In my deepest, darkest moments I have thought, I can’t go on like this, and the only thing that will stop it is if our daughter dies. And that is a terrible way to think, it’s heartbreaking.”

“We are only just surviving [the cost of living crisis],” she added.

“I don’t know what things will look like in a year or two if things continue as they are.”

‘There is nothing we can do’

Isabel experienced a few minor health issues before she was three and then, shortly before the birth of Ms Lewis’ second child, she was diagnosed with Battens disease.

“We just got a phone call one day telling us that she was going to die and there was nothing we could do about it,” she said.

Battens is a recessive disease, and Isabel “very rapidly began to lose her skills”.

She went from walking to crawling, to not being able to sit up anymore. Previously a chatty toddler, she was soon unable to say certain words and eventually stopped speaking altogether.

Isabel then lost her ability to swallow and eat, and eventually went blind.

By the time she was three, she needed full-time care.

The one place she is not in pain

Isabel is constantly in pain, except for when she is in the family’s hydrotherapy pool – a hot tub in the back garden.

But with their bills now topping £600 a month, of which they can barely afford to pay half, the family feel it can no longer turn this on.

“I feel guilty for talking about removing what some people might think is a luxury item in our home,” said Ms Lewis.

“But Isabel is bedbound, housebound, hasn’t left the house for over a year, hasn’t been to school for five years – her childhood and her life have been taken away from her.

“Suddenly I was in a position where I was thinking we can’t actually afford to heat the pool, the one place she is pain-free, and the one place where I can still hold her.

“And that is really hard to talk about because people lead you to a place over the years where they make you think having these things is your choice.”

She said parents are saving the NHS money, as Isabel’s hospital care would cost anywhere between £1,500 and £3,000 a day.

“We are doing that for her at home – as we should do, and we want to do that,” she said.

“She has only been in this situation for a few years and she won’t be here in a few years’ time.”

Growing mountain of debt

The family can no longer afford to keep up with its escalating energy direct debit and every day falls further into debt.

“It’s insulting hearing people say, put on a jumper or use an air fryer,” Ms Lewis said.

“Yeah, we could do all of that, but it still wouldn’t take away from the fact our energy bills are high, because we are at home all the time, we are running equipment and the heating is on to help my daughter regulate her temperature.”

The Lewis family is not alone.

Together For Short Lives is fundraising to provide grants to children receiving palliative care.

One family the charity supports recently hit the headlines after Kate Winslett donated £17,000 to help cover their rising energy bills.

Every parent’s worst nightmare

Andy Fletcher, its chief executive, said there are about 99,000 children living in the UK with a life-limiting or life-threatening condition.

Of these, around 3,000 are children who need ventilators to keep them alive.

“Parents already facing the emotional turmoil of the potential of their child dying in childhood, which is every parent’s worst nightmare,” he told Sky News.

“And on top of that, they’re trying to make as many special memories as possible with their children and family.

“And these are memories that will last them a lifetime, but at the same time, they’ve got these external pressures of rising costs.

“And that’s the real challenge when you are making choices at this time of year of what to prioritise because the number of Christmases they have may very well be short.”

A heart rate of four beats per minute

Hand in hand with soaring energy costs is the risk of blackouts in the UK, as rising demand puts pressure on supplies.

For 10-year-old George, a power cut at night is a matter of life or death.

With a resting heart rate of four beats per minute, he requires a ventilator at night to help him breathe.

Grandmother, Nicola Gatbutt, helps with his care as his mother, her daughter Holly, faces her own health issues.

After collapsing at work, Holly is now partially sighted.

But she has been told she does not qualify for personal independent payments – given to those who have a “long term physical or mental health condition” – despite not being able to drive, and having collapsed twice in the last two months and broken two joints.

Meanwhile, her electricity bill has tripled, taking it from £200 to £600.

“I am dreading my next bill,” Ms Gatbutt, from Skipton, said.

She goes to school with George five times a week as his carer and looks after him on some evenings, weekdays, and during the school holidays.

Energy companies, the grandmother and mother-of-three said, need to reduce their costs for children on long-term ventilation and provide them with more concrete advice on what to do in the face of a blackout.

‘He will never outgrow it’

The family also faces increased petrol costs – what used to cost £30 to and from the hospital now costs £55 – and Ms Gatbutt’s own mortgage has tripled, and now costs £305.

George has been ventilated since he was one year old and “he will never outgrow it”.

Despite his complex medical problems, Ms Gatbutt said: “If you see him in person it’s a different picture. He does cross country, he has just run a big race.

“He lives life to the full.”