Mum of terminally ill girl, 7, with ‘days to live’ says she can’t afford to keep heating on as bills skyrocket
Anastasia Hazell was diagnosed with Diffuse Intrinsic Pontine Giloma in March 2021
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A mother has spoken out about her family’s inability to keep the heating on in their home as they look after their terminally ill daughter who has “days to live”.
Seven-year-old Anastasia Hazell was diagnosed with a rare incurable brain tumour in March 2021 and was given a year to live.
‘All my time is spent worrying about this’
Alexandra, 35, has been trying to care for her terminally ill daughter but is struggling to keep the house running as energy costs rapidly increase.
She said: “The cost of living has just skyrocketed. We’ve had to turn the heating off twice.
“We just want to spend time with her but all my time is spent worrying about this.”
The family, who are based near Great Yarmouth, chose to have Anastasia be cared for by nurses at home as they wanted to spent the little time they do have with their daughter outside of the hospital setting.
Anastasia’s disgnosis came from ‘nowhere’
Anastasia was diagnosed with a diffuse intrinsic pontine glioma (DIPG) just a week after her sixth birthday last Spring.
She was given just 12 months to life as a result of the intreatable condidtion, with mum Alexandra saying that her daughter, who she described as a “normal and healthy” girl before her diagnosis, is now facing her last few days as the family struggle to heat the home.
Alexandra said: “Anastasia was a perfectly normal girl. She was doing really well in school.
“The diagnosis came completely out of nowhere. We noticed one day that she was a bit weak on one side.
“The doctors found a tumour and she was rushed to Addenbrooke’s Hospital. That’s when her whole life changed.
“She’s just so poorly. Last night she was struggling to breathe.
“I’m thinking how many more days are we going to have. It’s a nightmare.”
Family forced to camp together to keep warm
The young girl’s health has deteriorated over the past year, with Anastasia currently unable to speak, walk and can only be fed through a tube.
Alexandra, who is a support worker, said: “Anastasia is getting towards the end and we’re still having to rattle around for money.
“Our heating has gone off twice as we’ve run out of oil. It’s just impossible.
“It got so bad we were all camped in her room with a wood burner. We were throwing wood on the fire to make the room warm enough to get through the night.
“The other time we ran out of oil we were having to put heated blankets on Anastasia because she was turning blue.”
Alexandra added that the family had saved up around £1,000 for Christmas, but were forced to use this savings pot on food and heating before celebrating the holiday.
She also said that the cost of living has led to the family being unable to care for Anastasia in the way they would like to.
Anastasia said: “We haven’t been able to give her a warm bath or shower sometimes. It’s crazy. There are weeks when we can’t afford basic things.”