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“Open the curtains,” Emma Eastham tells her son Alex, “shall we show them your oxygen and what we do with it?”
Alex is a thriving 16-year-old who loves music, DIY and (of course, because this is Wigan) Rugby League.
“I want to go to College,” he tells me, “and become a joiner.”
But when he was a baby, Alex’s mum was told by doctors that he would not survive.
Alex was born prematurely and had liver failure.
He’s developed epilepsy, chronic lung disease and sleep apnoea amongst 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 run off batteries and mains power,” Emma explains. “It’s constantly on the go in this house and I have noticed that as prices are going up, I’d say it’s been an extra £300 a month for us to pay just in terms of household bills and things.”
For this family, this is more than an cost-of-living crisis: it’s a health crisis too.
“For Alex it’s a case of life or death obviously, because he’s on his oxygen machine overnight. So if we couldn’t literally afford to pay those bills, I don’t know what would happen.”
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Alex has a series of complex health conditions
This is the stark situation faced by families with sick and disabled children at home, who rely on life-supporting machines.
As energy prices go up, they simply cannot unplug.
“It worries me for the future if things do get worse,” Emma says. “How will it affect us as a family, what do we do? It’s all very well and good someone coming in and saying “get an extra job, do this and do that” but I struggle now with the work I do now and looking after Alex. I mean Alex alone is a full-time job, caring for him.
“I’ve just got to deal with what I can, I suppose.”
For Emma’s family, and families like hers locally, some respite comes at a nearby care centre for children and young people with disabilities and complex health needs.
Called “Brighter Dayz”, the centre was set-up by Emma and other local parents when other care provisions shut down just before the first COVID-19 lockdown.
The facility was entirely built and funded by the community and has become a life-line for families.
Emma co-founded the Brighter Dayz care centre
Andrea Mordechai travels half-an-hour the town of St Helen’s to bring her son Jack, 13, here once a week.
“It’s stressful enough raising a disabled child,” Andrea tells us, “and right now with the price of everything going up it’s even more of a worry. It’s just unaffordable.”
“Coming here, it’s support at the end of the day, and there’s not much of it around at the minute.”
The community has come together in Wigan, to provide children and their families with this support that they so acutely need.
And which they worry, as prices rise and budgets tighten, will become harder to find.
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