Cost of Living Crisis Care Appeal launches
Today, we've launched our Cost of Living Crisis Care Appeal, urging Scots to help dying children and their families severely impacted by the cost of living crisis.
As well as providing round-the-clock care for their vulnerable children, many families supported by CHAS are feeling the devastating effect of rising costs and are struggling to make ends meet.
We're working hard to offer vital support to families facing financial hardship nationwide through our innovative Family Income Maximisation Service which provides crucial advice for families who may be forced out of work to care for their children, struggling to afford regular hospital transport or suffering from food poverty.
Laura Wingate and Marcus Dicks from Inverness were assisted by CHAS after their second son Theodore was born just as the pandemic hit in March 2020.
Marcus found himself unemployed while caring for Theodore who was born with chronic lung disease, brain damage and a range of other complex care needs. He said: "I was due to sit my bus driver's licence test but due to lockdown this was not possible and they couldn't put me on furlough because I started after the cut-off date. When I lost my job sorting out benefits while sitting in hospital with Theodore was so stressful. CHAS helping us with our finances has made a real difference to our lives."
Laura added: "It's definitely helped massively, having someone there to give us a hand and make sure we're getting what we're entitled to and help with things we couldn't really do before."
Theodore, whose twin sadly died in utero, had to be delivered early at Raigmore Hospital in Inverness on 8 March 2020 at 31 weeks. Laura said: "When Theodore was born I didn't even get to hold him. He couldn't breathe. Doctors took him away to ventilate him using a method that had never been used on a baby so small. It saved his life, but that was just the start of our fight."
The tiny tot was treated at the Queen Elizabeth Hospital in Glasgow where he remained for five months before returning to hospital in Inverness where he finally got to meet his big brother Isaac, now five, who has become his "favourite person in all the world".
Theodore, who is now two, finally came home from hospital on his first birthday but, because he is wheelchair-bound, ventilated and tube-fed he needs 24/7 care.
Marcus said: "Nurses watch Theodore overnight so we can sleep but if they can't make it we need to stay awake by his side in case he stops breathing. We've been his round-the-clock carers for a year now and we live in fear of the day we can't resuscitate him."
Thankfully, the family are able to get some respite in the form of Robin House hospice in Balloch.
"Going there for the first time felt like a breath of fresh air. It was so pleasant to be away from home with Theodore and Isaac for longer than a few hours and not have the responsibility of housework and school life. Being able to go and have a shower without having to worry about who would look after Theodore and just having a taste of what normal family life is like was wonderful.
"The staff are just there when you need them and Isaac also gets really excited when he finds out we're going and calls it a mini holiday!
"During our stays we have been to the Science Centre in Glasgow, Blair Drummond Safari Park and the Sea Life Centre at Loch Lomond.
Laura added: "The charity is also arranging for us to have some support at home via the CHAS at Home service. This will allow us the freedom of being able to go out without always having to take Theodore and all his equipment with us and ensure he has his feeds at the appropriate times. It will also mean we won't have to constantly think about possible places we could stop the car in an emergency if Theodore was to become unwell.
"The support CHAS has given us literally has made our lives so much easier. We can't thank them and the supporters who donate money to the charity enough." CHAS Family Income Maximisation Officer, Monica Currie said: "The cost of living crisis has resulted in many of the families we support facing some of the worst financial difficulties they have ever experienced. Sometimes families are forced out of work to care for their children around the clock.
"The rising cost of fuel is also affecting the families we support who often have to make multiple trips to appointments every week. We are also witnessing a lot more food poverty among families due to the rising cost of inflation and this is something that is impacting bereaved families too.
"Many don't have a choice in whether or not they can turn the heating off as their home needs to be a set temperature for their child's comfort. In order to maintain their child's health, complex and various machines and equipment are required to be on 24/7. This has huge implications on their utility bills, even more so during the cost of living crisis.
"Over the past three years, our Family Income Maximisation Service has helped over 300 families, helping to unlock nearly £400,000 in much needed funds and we want to continue to offer this vital support."
Please, if you can, donate to our Cost of Living Crisis Care Appeal.