Children’s Hospice Week
The survey, conducted on behalf of Together for Short Lives for its Children’s Hospice Week (17-23 June) campaign, found that 20% of the British public do not know what children’s hospices are. Children’s Hospice Week’s ambition is to raise awareness of what children’s hospices mean to seriously ill children and families, to celebrate the lifeline care they provide and show how they support families to make precious memories. It’s hoped that by changing perceptions around children’s hospices that more families caring for seriously ill children seek help from their local hospice.
Based in Sussex, Chestnut Tree House is a charity offering a range of support for families in East Sussex, West Sussex and South East Hampshire looking after a child or young person with a life-limiting or life-threatening condition. The support provided includes specialist playgroups, art and music therapy, community and respite care, end of life care and support through bereavement. Importantly, the care involves the child or young person’s whole family, lasting as long as they need.
Cordelia is described by her mum as a force to be reckoned with. A lover of life who is constantly on the go, who loves swimming and singing and generally getting messy. But the nine year-old can have up to 40 seizures a day for a few days at a time. On a bad day, she struggles to even get out of bed.
Because of the complexity of Cordelia’s condition, Chestnut Tree House is the only place the family can spend time together away from home. It is also the only place that parents Sharon and Kevin get a full night’s sleep and spend some time as a couple.
“We always do her bedtime routine, we always say goodnight because, with a child like Cordelia, we just don’t know if we’re going to see her tomorrow,” says Sharon. “But it’s also our only chance to spend some time just the two of us. We can mooch around and do what we fancy; get in the car and just see where we end up, watch movies, or just sleep. That might sound really boring, but we don’t ever stop at home.
“Cordelia is on the move the whole time, she’s a busy, busy girl. It’s just nice for someone else to be run ragged for a while. And we know that she is having fun and doing stuff she loves.”
Children’s Hospice Week (17-23 June) is run annually by children’s charity Together for Short Lives, and is the UK’s only awareness and fundraising week benefiting children’s hospices and the families they support. The aim of the week is to bring all 54 UK children’s hospices together to raise awareness of the support they provide and to dispel myths and misconceptions about children’s hospice care. This year, the campaign’s theme is Moments that matter, drawing attention to the role hospices play in helping families make special memories together.
How you can help
This year, Chestnut Tree House is calling out for families, community groups, nurseries and schools in the local area to hold a Teddy Bears Picnic during Children’s Hospice Week in aid of the hospice, to raise vital funds and awareness of the work they do. To get involved, supporters just need to pick a date during Children’s Hospice Week, choose where they’d like to hold their picnic, and ask everyone to attend with their favourite teddy bear and a small donation. Every penny raised will help to make a difference – helping Chestnut Tree House to make moments that matter for local children and families.
· £5 pays for one minute of all Chestnut Tree House’s care services – at the hospice and in families’ own homes
· £35 enables a child to experience a magical hour in the hospice’s multisensory room
· £50 will give a child the opportunity to benefit from a swim in the hydrotherapy pool
· £150 enables a family of four to have an overnight stay in one of Chestnut Tree House’s family rooms whilst their child is cared for by our nurses.
If you would like to find out more information on the work Chestnut Tree House does, please visit https://www.chestnut-tree-house.org.uk/