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The Duchess of Cambridge Kate Middleton is joining charities, hospices and volunteers this week to raise awareness and much-needed funds for hospices across the UK.
There are 49,000 children in the UK living with a life-limiting or life-threatening illness. That equates to around one child in every school.
When families need help and caring for a child is a full time job for parents, children’s hospices are there to offer support, both practical and emotional. It’s an invaluable kind of help that changes lives and allows families to make the most of the time they have together.
This Children’s Hospice Week, hospices and charities will be holding a range of themed fundraising events. Together for Short Lives, which helps children dealing with life-limiting conditions and their families, is asking people to turn #UpTheVolume and make a noise about the importance of children’s hospice care.
The idea is for fundraisers to get involved and organise or take part in raise-the-rafters events, such as music quizzes, discos, or karaoke parties – and wear a loud, brightly coloured outfit to match. All the money raised will help fund vital hospice services which support children and families across the UK.
For families like Joel’s, their local hospice is a lifeline. Joel was born with a rare condition, with a gap between his food and windpipes, meaning that food and liquid can get into his lungs. At two weeks old, he had to have a tracheostomy tube fitted in his windpipe to help him breathe, a procedure which means he is unable to make any sound.
“It has been a difficult journey, a really traumatic time,” explains his mum, Claire, who is supporting Together for Short Lives. “Joel could pick up a chest infection really easily and in addition to all the normal baby essentials we have to carry oxygen tanks, feed pumps and suction machines. And of course, we couldn’t just leave Joel with our family or parents, as they aren’t trained to treat him.”
Joel, Claire and dad Nathan received support from Zoë’s Place Children’s Hospice, which gives his mum and dad much-needed breaks from the challenge of caring for Joel day and night. “We can’t do anything that a normal family with a new baby would be doing,” Nathan said. “Without the respite that Zoë’s Place provide us we would really struggle.”
Toddler Grace has an undiagnosed condition and her family is supported by Andy’s children’s hospice in Grimsby.
“Life is pretty hectic with Grace,” says her mum, Nicky. “She keeps me on my toes. Sometimes she forgets to breathe, so I have to be with her all of the time. Andy’s has been very helpful to me. It gives me time to myself, which doesn’t often happen, and the stimulation Grace receives when she visits is very good for her.
“The staff are amazing with her. They know all of her quirks inside out. The sensory room is so helpful because Grace has vision impairment issues… Grace is making progress, slowly. She’s heading in the right direction; it’s just time.”
The Duchess of Cambridge, who is the royal patron of East Anglia’s Children’s Hospices (EACH), recorded a heartfelt message, highlighting the importance of the support offered by hospices to families with seriously ill children.
“As patron of EACH I have seen the incredible difference that children’s hospice and palliative care services can make for children, young people and their families,” she said.
“They deliver first-class care in a safe environment that feels as close to home as possible, full of colour, warmth, love and support.
“I hope you will join me in shining a light on the dedicated and inspirational staff and volunteers, and the lifeline services they provide for children and their families. The work they do is extraordinary, and it really does make a world of difference.”
If you want to join in fundraising efforts and raise awareness, you can follow the conversation on Twitter and Facebook with the hashtag #ChildrensHospiceWeek. You may also want to make a donation to Together for Short Lives or your local children’s hospice, which you can find here.
