At Demelza, stories are central to what we do; our own journey as a charity began with the story of Demelza Phillips, daughter of Derek and Jennifer Phillips. Demelza tragically died of a brain tumour at 24 years old, but her work in a children’s hospice in Birmingham inspired her parents to found their own children’s hospice after she died, which became Demelza as we know it today.
Demelza’s legacy, and the inspiration she passed on to her parents, is kept alive in the extraordinary care we provide to children, young people and their families every day. Fittingly, it’s these families being brave enough to share their own stories that has helped us to thrive as a charity for 25 years.
Insight into the lives of these families, shared in their own words, helps Demelza to reach our supporters and tell them how and why our work makes a difference.
As Holli, mum to Albert and Wilfred, says: “I don’t think most people understand how difficult it is to do really normal stuff when you have a seriously ill child. Without support, even basic things like going out to the shop or cooking dinner become a whole operation.” Helping our supporters understand those everyday issues facing the families we support is key to helping Demelza raise funds and keep providing care.
We also recognise that allowing a family to tell their own story can be incredibly empowering, as well as therapeutic. When life can be a constant rollercoaster of hospital appointments and form-filling, on top of all the commitments any other parent would face, telling their story can provide a welcome chance to pause and reflect – often for the first time. It also gives families a chance to celebrate their child’s life and everything they have achieved as Laura, mum to Jaxson-James, shares:
“It has been amazing seeing Jaxson’s story and photos in Demelza shops, brochures, leaflets, billboards, garden centres, football stadiums and online. Jaxson is sadly on palliative care, so it brings me happiness that the story of his conditions and disability are helping the charity raise vital funds. Jaxson has one proud family for all he’s achieved.”
It’s not just families either; many Demelza colleagues have shared their stories over the years. As well as reaching new employees and volunteers who can help drive Demelza’s work forward, it can also help families accessing our services understand what support is available to them – like this recent blog about our neonatal bereavement support from Family Liaison In-Reach Practitioners Lauren and Rebecca.
“It doesn’t matter that they’ve never visited Demelza – the support Rebecca and I offer families if they lose a baby is the same support we would offer any bereaved family,” says Lauren. “We can offer them the chance to do memory-making with their baby; whether that be handprints on a canvas, or plaster casts of a parent holding their baby’s hand, or inkless fingerprints which can be turned into jewellery, a member of the Demelza team can come to the hospital and deliver that.”
Stories like these will always be woven into the work Demelza does to support children, young people and their families. If you want to read more stories of Demelza’s expert care and support, you can visit the Family Stories section of our website or read our blog.