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Isabel’s story: “Our daughter will die, and we will be left with only grief – and debt”

Sophie is mum to Isabel, age 11, who has Batten disease: “Isabel is bed-bound and palliative. She isn’t able to leave our home, and is completely dependent on another person for all of her care.” Isabel relies on a magnitude of equipment to keep her comfortable and alive: “We are running a mini intensive care unit in our home” says Sophie.

She requires regular suction day and night to stop her from choking and to help her breathe. Isabel isn’t able to control her own temperature and so heated blankets keep her warm, and the heating in the house must run to keep her temperature at a safe level. Sophie has to regularly run the washing machine due to incontinence.

Due to stiff and painful muscles, the family bought a special hot-tub to provide at-home hydrotherapy to ease Isabel’s pain: “We can no longer meet the rising costs of running this, and so we will have to switch it off. Which means that Isabel will no longer be getting the relief she needs from stiff and tight muscles.”

“Every part of Isabel’s life relies on the use of machinery, which obviously runs on electricity. Our bills are rocketing and we can’t manage for much longer. It’s terrifying and it just feels out of control. The reality is that Isabel will only live for a few months, or a year or two more if we are really lucky. And what will we be left with? Overwhelming grief and debt.” Sophie says she feels like they are constantly living in survival mode.

And now, the family are facing the reality of winter blackouts: “Isabel cannot leave our home as she is totally bed-bound. An ambulance doesn’t have the right equipment to move her. What will we do if our power goes out? Everything we run relies on gas and electricity, so it’s terrifying really. Isabel would be at risk of choking, and dying. My daughter won’t live much longer, we need help now.”

“For my family this grant means we can pay off some of the debt we have with our energy supplier. It’s a lifeline to us,” says Sophie.

“We are so grateful to Together for Short Lives. They truly understand the hardship so many families face which is being caused by the cost of living crisis.

“Our debt is rising each month because our energy usage exceeds what we can afford.  Our substantial energy use comes from managing a huge range of essential equipment which our daughter who is in receipt of palliative care, relies upon to keep her comfortable.”

Family stories