“Open the curtains,” Emma Eastham told her son Alex, “can we show them your oxygen and what we do with it?”
Alex is a budding 16-year-old who enjoys music, DIY and (of course, because it’s Wigan) Rugby League.
“I want to go to college,” he told me, “and become a carpenter.”
But when he was a baby, doctors told Alex’s mother he wouldn’t survive.
Alex was born prematurely and suffered from liver failure.
He developed epilepsy, chronic lung disease and sleep apnea among a range of other difficult and incurable conditions.
At night, he uses an oxygen machine.
During the day, a pump provides vital food, water and medicine.
“Everything is battery and mains powered,” says Emma. “It’s constantly on the move in this house and I’ve noticed that as prices go up I’d say it’s cost us an extra £300 a month just to pay in terms of household bills and such.”
For this family, it’s more than a cost of living crisis: it’s also a health crisis.
“For Alex, it’s obviously a case of life or death, because he’s on his oxygen machine overnight. So if we literally couldn’t afford to pay those bills, I don’t know what’s going on. would pass.”
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This is the predicament faced by families with sick and disabled children at home, who depend on life-saving machinery.
As energy prices rise, they simply cannot unplug.
“I’m worried about the future if things get worse,” Emma says. “How will this affect us as a family, what do we do? It’s very good that someone comes along and says ‘find some extra work, do this and do that’, but I’m having a hard time. now with the job i am doing now and looking after alex i mean alex alone is a full time job he takes care of him.
“I just have to go with what I can, I guess.”
For Emma’s family and families like hers in the area, respite is offered at a nearby care center for children and youth with disabilities and complex health needs.
Called “Brighter Dayz”, the center was set up by Emma and other local parents when other childcare services closed just before the first COVID-19 lockdown.
The facility was entirely built and funded by the community and has become a lifeline for families.
Andrea Mordechai drives around the town of St Helen’s for half an hour to bring her 13-year-old son Jack there once a week.
“It’s stressful enough raising a child with a disability,” Andrea tells us, “and right now, with the price of everything going up, it’s even more worrying. It’s just unaffordable.”
“Coming here is support at the end of the day, and there’s not a lot of that at the minute.”
The community has come together in Wigan to provide the children and their families with much needed support.
And which they fear, as prices rise and budgets tighten, will become harder to find.