'Siblings of children with serious conditions are affected too'
As families up and down the country prepare for their summer holidays, there are some children who won’t be running into the sea on a sunny day, scaling a climbing frame in a playground or having a day out at an amusement park. Not because they can’t, but because they have a sibling whose needs prevent the whole family from doing what so many other families do in their summer holidays.
"Sandy beaches aren’t very wheelchair friendly," says Jo Snow, a Bristol based mother of three. "And when you’re looking after a child who has complex medical needs, the time you have to spend with your other children is severely limited. No pushing them on the swings or taking them to an amusement park, because there’s a child whose needs supersede theirs.The brothers and sisters of a child with a life-limiting condition have a very different childhood to other children."
Jo’s daughter Stella was born in 2009 with a life-limiting condition, and Jo and her husband Brad went on to have two other children, Lexi (14) and Felix (11).
"Knowing Stella’s time with us was going to be short made it even more important that we made lasting memories with her and for her," says Jo. "But it was important to make those memories with Lexi and Felix too.They only get one shot at childhood, even though, unlike Stella, they could look forward to an adulthood as well. And you find yourself thinking, this time is so important for all three of them, but the formative years of two of them are being heavily impacted by the medical needs of Stella."
Stella died last year aged just 14.
Jo’s family was supported throughout Stella’s life and beyond by Jessie May, a specialist children’s palliative care charity that cares for children with life-limiting and life- threatening conditions and their families in their own homes.
"I was worried that it would feel a bit invasive, nurses coming into our home, but the Jessie May staff soon became part of the furniture, and the nature of their support meant that I could spend precious one-to-one time with each of my other two children, knowing Stella was in the safest of hands – and in a place where she felt very safe too," says Jo.
But Jo’s experience - and that of Lexi and Felix - isn’t shared by every parent of a child with a life-limiting illness. Jessie May is the only provider of in-home palliative care in the South West. Worse, across the UK there is a £300 million government funding gap in children’s palliative care, leaving many children and families struggling, isolated and alone. It’s no wonder that siblings of such children are more prone to experiencing mental health challenges than their peers.
"Care in the home gives families a chance to be families," says Jessie May’s CEO, Daniel Cheesman. "Jessie May nurses are specialists in caring for very seriously ill children, whom they get to know well over the course of their lifetimes, while parents can spend time with their other children without worrying. The Jessie May service means that you don’t have siblings doing their homework in a hospital setting, or missing out on football or dance practice because their brother or sister is ill."
Jessie May relies on the generosity of its supporters, a community that has come together to relieve the stress on families like Jo’s.
"Jessie May gave us the opportunity to make at least some of the memories that other families might take for granted,” says Jo. "Lexi and Felix have had a different childhood from many other kids, but the care shown to Stella meant that they didn’t miss out altogether."
Jessie May supports children with life-limiting and life-threatening conditions, and their families, in Bristol, Bath, Somerset, Gloucestershire and Swindon.
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