Our hospice appeal will give families gift of time
Today we launch our £87,500 appeal to help establish a new volunteer service that will make a huge difference to the families of children with life-limiting conditions.
Each Help at Home will get tasks done and provide a bit of breathing space for those families who need it most. The scheme already operates in other counties – now we’re helping to bring it to Cambridgeshire. GEMMA GARDNER explains how it works and meets a family who have benefited.
Three years ago, Sam Morley noticed that her six-year-old son Euan was having trouble walking and was not putting on weight.
Within six months, the youngest of her three children was unable to walk – and within a year he was unable to talk.
In December 2013, Euan was diagnosed with a rare degenerative and neurological condition. He was six-and-a-half.
“That first year after diagnosis, he went from running around in August one year to being hoisted everywhere the following summer and not being able to speak,” Sam told the Cambridge Independent.
“At the beginning of 2013 we had some concerns over lack of weight, specifically putting on weight, and when Euan was about six years old, things just weren’t right with some of his motor skills.
“Just a few months after that he stopped being able to walk properly, by which point we were in the cycle of tests, and really, within six months of diagnosis, he couldn’t walk at all. And within 12 months he couldn’t talk.
“And then, it was probably around six months later, he had no trunk control and he’s got very little motor control any more. He has no independence. It was quick that first year... a lot of change.”
Euan lives with his mother Sam, father Mike, 45, and his older sisters Cerys, 14, and Rosanna, 12, in Ipswich, Suffolk.
Now aged nine, he attends Thomas Wolsey School in the town, which supports children with with moderate to severe physical and associated learning difficulties. He also spends one afternoon a week at his local Broke Hall Primary, which he has attended since he was five.
“He’s been with them for a long time so we like to keep that,” said Sam, 44.
The family have been receiving support from The Treehouse – Each’s Ipswich hospice – since February 2014 through sibling and family events.
The hospice’s Help at Home service has been supporting them since January 9, with a volunteer visiting the family home each week.
“I don’t expect we have as much to do as some other people, but it’s just time-consuming,” said Sam.
“We have to get him up – he can’t do anything to help. He’s hoisted everywhere, so in the mornings it takes us about half an hour to get him dressed.
“And he’s tube-fed, so he then has his breakfast and we can get on and do things while that’s happening, but you can’t get out of the door quickly.
“Then I’ll take him to school and he comes home on the school bus and he’s home by around 4pm.
“And then I change him and put his food on for tea, then get tea for the family, and then we both have to be in to give him a bath and it’s probably about an hour-long routine to get him into bed.
“It’s really the time that it takes. We love looking after him – it’s just really time-consuming.”
Sam added: “I’d asked for help with the weekly cleaning. It’s just nice to be able to come into a room and think ‘Oh it’s clean, it’s tidy’. I don’t have to sit, look and think ‘I should be doing that’.
“What’s nice about that is even if it doesn’t get done in that time, it doesn’t matter because there’s been enough of it done and I can just get on with doing the other things that just would never get to the top of the list.
“What we found is that people would love to be able to help us, but in terms of Euan’s care, there’s not an awful lot we can ask friends to do. There’s a limit to what they can do to help. A lot of people don’t like to ask friends or family to do practical things – but the people who volunteer want to do that.
“And it’s every week – even your very close friends wouldn’t give up that much time. For volunteers, whatever they offer is going to be something that people need. I think everyone should get a volunteer.”
Having the volunteer means that Sam can spend more time with Euan, who cannot be occupied like most children his age.
“He can just get bored,” she explained. “You can’t put him in front of the TV because he can’t really look at it. So, that guilt of trying to do stuff around him while he sits there just disappears.
“At the end of the day, I don’t just want him to sit there while everyone else does stuff around him. I want to be able to sit and play with him. And just be a family together. Having the volunteer helps us to do that. It’s also nice to get a break from the mundane.”
When the family get to spend time together they like to go for walks, spend time in the garden and go camping. Euan’s sisters like showing him YouTube videos and making him laugh.
Sam said: “The thing that I’ve learnt the most is that even without the speech, you think people who can’t speak, can’t move and you think can’t communicate and don’t have any quality of life... it’s absolute rubbish. They can communicate – you’ve just got to tune in and they have tremendous quality of life.”
How to donate:
Go to uk.virginmoneygiving.com/fund/EACHHelpAtHome
Drop off cash or cheques – made payable to Each – at the charity’s Milton office at 42 High Street, indicating your donation is for the Cambridge Independent appeal.
Set yourself a challenge and get your family, friends and colleagues to sponsor you. You could run a marathon, do a bike ride, swim or parachute jump, shave your head or do a sponsored silence.
Organise a fundraising event such as a quiz night, music gig, bingo or even a ball.
Let us know – email firstname.lastname@example.org