This week, Kayleigh Mason will get up at 4am to work a full shift making sandwiches at Greggs, before taking her son William on a 110-mile round trip to hospital.
It’s a normal day for the pair. 10-year-old William has to see doctors and physios weekly – sometimes more – to deal with a rare progressive muscle wasting disorder.
If Kayleigh were to take the whole day off, she wouldn’t be able to pay the bills. So she schedules the appointments after work.
Looking after a disabled child can be costly and exhausting. William regularly has to travel from his home near Walsall to a specialist hospital, so there is the car, petrol and parking to budget for. He needs nappies and specialist equipment, and William’s condition leaves him vulnerable and in pain, so Kayleigh has to keep the heat on round the clock to prevent him getting ill.
In September she lost a whole week’s wages because she had to spend five days in hospital with her son as he underwent vital physiotherapy, although she says her employers are exceptionally supportive whenever she needs time off.
It’s been challenging for Kayleigh, 32, since William was diagnosed three years ago with a condition that she’s not yet been given a name for. She is grateful for the invaluable support she’s received from Family Action’s Walsall Special Educational Needs and Disabilities Information and Advice Support Service (SENDIASS) who are helping her negotiate the complex and daunting education, health and care plan process.
‘It can be tough. We are fighting for education, equipment, help with paperwork. It’s a real battle. It’s complicated and very costly. It’s always a fight for William’s future. But that’s what we’re determined to do.’
However, that’s not the only thing the charity has helped Kayleigh with. Last Christmas, they also helped but a big smile on her little boy’s face.
As part of their 2021 Family Fund’s Toy Appeal, William received a gift at a SENDIASS event that made his day.
Talking about how her son’s face lit up when he unwrapped the present – a red remote-control helicopter – Kayleigh, recalls: ‘He was so excited. He’s obsessed with the museum at RAF Cosford and we always go to the air show. He loves helicopters and planes, so he was thrilled. He puts it on the bed to keep it safe and flies it off from there. It was overwhelming to get such a lovely gift.’
How you can help
Many families are having to make impossible decisions – whether to heat their home, purchase food or buy their children a present. This Christmas, you can help Family Action to support families, by giving the gift of a magical Christmas – that’s real magic.
To support the Family Action ‘Make Theirs Magic’ campaign click here.
The present was donated as part of Family Action’s Toy Appeal, which has been running for more than a decade and has distributed more than 60,000 presents across the UK. The gifts are distributed to families across Family Action services, through schools, food clubs, children’s centres, family hubs and young carers services.
‘It means everything to the kids to get these gifts,’ explains Kayleigh. ‘And even more this year with the cost of living. Having a disabled child is costly enough, and with it being so hard this year, it will mean even more.
‘If the toys mean as much to other kids as it did to William, that will be massive. You don’t need hundreds of presents under the tree – that one toy would have made his whole Christmas. It’s just great to have that bit of help when you’re worrying about the bills.’
William uses a wheelchair and can no longer walk longer distances. He’s losing the ability to use his hands and he struggles to swallow. The myopathy affects his lungs, bladder and bowels. He is now being investigated for problems with his eyes.
His mum adds: ’William and I are a team. We’re always together. Even when I’m at work, he’s with me. He’s very, very intelligent. He loves gaming, he loves playing the keyboard. He’ll listen to music on YouTube and try and play it straight after. Which is really important to us because he’s losing the function in his hands.
‘We want him to do everything. He wants to do his GCSEs. He wants to have a job. He wants to be a games developer, and that’s what we strive for – to do the best for him.
‘It is hard. But I went to counselling, which really helped my mental health. And I go to lots of groups with disabled children and meet up with their parents to talk to others in the same situation. I just try and talk things through, process it and fight for everything that William needs.’
Family Action outreach support worker, Ashleigh Sinclair, works in Stockton and says it is a challenging time for the families she works with, many of whom have to choose between heating or eating.
‘Every referral we get has a link to the need for financial support, or the need for food and these referrals are for families with three, four, or five children,’ she explains. ‘We know that parents are going without meals. They are not eating during the day so that they can feed their children.
‘We have heard of times when our families’ children are at school chatting about Christmas with their friends and when other children in their class are saying, “I’ve asked Santa for this toy at Christmas”, our children are returning home and asking if Santa is coming to their house at all this year.
‘It is heartbreaking to think that parents are deciding between buying food or toys at Christmas.’
The toys are provided by people and local businesses. One father was in tears after receiving £200 food vouchers from Family Action’s grant fund; he’d been working all hours possible but had been unable to save up any cash for Christmas.
Ashleigh adds: ‘Our team love to go out to deliver the toys. It is an amazing feeling for us and for our families. This year, for the first time, we are including Christmas Eve boxes and we have launched the ‘Winter Warm Up’ campaign, where all the families we work with can request coats, dressing gowns, slippers, and socks, anything to help keep them warm this winter, to help with the fuel poverty they are facing.’
David Holmes CBE, Chief Executive of Family Action says: ‘For many of us, Christmas is a magical time, when friends and families come together to enjoy great food, good cheer, gifts and goodwill. However, through our work every day with vulnerable families across the UK, and from the findings of our new survey, we know that many families will be struggling more this year than ever before.
‘It is desperately sad that this Christmas, over a third of people are expecting financial pressure from the cost-of-living crisis to affect their mental health and wellbeing and nearly half of all adults are facing worries about affording food over the festive period. This is a stark reminder of the challenges facing families this Christmas.’
‘We know that families are worried, not only about how they will afford Christmas, but how, in light of the current financial crisis, they will bring the magic of Christmas to their family this year. ‘
‘Many families are having to make impossible decisions – whether to heat their home, purchase food or buy their children a present. This Christmas, you can help Family Action to support families, by giving the gift of a magical Christmas.’
Family Action poll reveals shocking statistics about Christmas during the cost-of-living crisis
- 50% of respondents said they will have to sacrifice food, heating or gifts thanks to the cost-of-living crisis.
- One in five people won’t be heating their homes over Christmas, while two in five said they are worried about buying food.
- 32% are stressed about buying gifts, and 39% are fearful about how they will pay the bills.
- One in ten adults will not be giving any presents at all, according to Family Action, a national charity that provides practical, emotional and financial support to families across the UK.
Family Action is providing essential financial support to families in crisis, through the provision of Family Action Grants and help and support through its free 24/7 helpline FamilyLine. For more information, click here.
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