Children’s Hospice Week: Ruby Williams

Children’s Hospice Week (22nd to 28th May) is an annual awareness campaign ran in conjunction with Together for Short Lives which raises awareness about children’s hospices and the hard work they do to support families who have a child diagnosed with a life limiting illness, such as Niemann-Pick disease. We want to use this week as an opportunity to highlight how important hospices are to people in the NPUK community, people like Kelly Williams (mother to Ruby, NP-C):

When Ruby was diagnosed with NPC in 2014, it was absolutely devastating and launched us into a world of uncertainties. Soon after, we were referred to Bluebell Wood Children’s Hospice who helped steer us through the bombardment of obstacles we were faced with. Whilst they were able to assist by co-ordinating Ruby’s medical care, it’s all the other amazing services they offered both to Ruby and our family as a whole that make me eternally grateful to them. The hospice provided a stimulating and safe environment in which to make invaluable memories, doing things that we may otherwise have been unable to do.

They also provided vital respite to us, both in the hospice and at home, which enabled us to recharge our batteries and have a breather from the intense 24 hour care regime that Ruby needed. Bluebell Wood were instrumental in making Ruby’s last couple of weeks with us so memorable and happy for her. No words can express how indebted I feel to all the incredible staff at the hospice, to the extent that I did a fundraising skydive this weekend to try and demonstrate my gratitude to them!

Without the hospice, the quality of Ruby’s all too short life would have been massively impacted; she absolutely loved spending time there and for that reason alone, it is so important that we support these places who receive minimal funding from the government.

You can learn more about Bluebell Wood Children’s Hospice, and the fantastic work they do, at their website here.