It was such a shock. You always hear about people around you but you don’t really think it can happen to you.
Felicia, Luwan's mum
In early 2020, Luwan, then aged three, started to lash out at other children, became lethargic and developed cold sores round his mouth and nose. "Luwan really is the sort of child who lights up a room," says Barry, his dad. "We knew something was definitely wrong."
After a string of appointments and hospital stays, Luwan was finally diagnosed with leukaemia. The family were referred to ellenor hospice, who were instrumental in keeping their life as normal as it can be. “Not only do ellenor nurses help us with practical things,” says Dad, Barry, “but they are always at the end of the phone to talk to.”
Luwan’s siblings – older brother, Mielan and younger sister Lillah – were involved from the very beginning and the whole family were enrolled in music therapy, provided by charity partner Nordoff Robbins. The family were no strangers to music, as Barry is a music teacher himself, but he admits that the sessions far exceeded their expectations.
“Seeing the kids in that sense of engagement was something I had never witnessed before. To see them all laughing and screaming with joy was such a blessing.”
Barry, Luwan's dad
It’s stories like Luwan’s that demonstrate the holistic nature of hospice care – it was not just for Luwan, but for the whole family. We believe that everyone should get the best possible care when they most need it.
Yet 100,000 people in the UK are missing out. We know that some groups miss out more than others. Hospice UK is working tirelessly with hospices, with other care providers, with governments and with you, our supporters, to make sure this changes.
Hospice Care Week celebrates the value of support, of care and of what matters to us as individuals at the end of life when we need it most. When you give to Hospice UK, you become part of our work to make sure that everyone - no matter who they are, where they are or why they are ill, receives the best possible care at the end of life.