Recently I had the privilege to meet Lucy Watts and her mother Kate. Lucy has agreed to become a Global Youth Ambassador for the International Children’s Palliative Care Network, and I went to see her so that we could make a video for an upcoming meeting in Geneva on children’s palliative care. Lucy, who is 21 years old, has Ehlers Danlos (ED) Syndrome, a condition that affects the connective tissue, resulting in her tissues being weak and stretchy and in multiple organ failure. She is wheelchair bound and spends most of her time in bed. I was keen to meet her and her mother and to hear their story, and how Lucy is determined to make a difference in the lives of others.
The time I spent with them both was an inspiration to me, and renewed my determination to fight for access to palliative care for children and young people. Whilst it has not always been easy for them to access palliative care, with Lucy initially unable to access services, since she has been supported by the J’s Hospice a service for young adults, this has changed, and she credits palliative care as giving her quality of life, and enabling her to ‘make happy memories’ and to ‘live a good life’ as well as being prepared for the future and planning what she wants at the end of her life. In talking to both Lucy and Kate I was aware of the openness and honesty that existed between them, and that although hard, they had been able to talk through some of the difficult issues, thus ensuring that they can face the future together, and be able to plan together.
During my time at their house, we covered many issues, apart from taking the video – ranging from finding out that I know a friend of Kate’s who lives in Uganda, the characters of the cats and Molly the dog, some of the challenges of living with ED, as well as some of the ways that Lucy’s illness has shaped their lives, and what they have learnt and how they have developed through their experiences. It was an honour to be able to give Lucy her certificate acknowledging her role as a Global Youth Ambassador for ICPCN, and to hear about what she is doing for other charities as well, in her determination to make a difference. On her blog she writes: “My biggest fear in life is that I won’t have made a difference, that my life won’t mean anything. I hope I am making a difference with what I am doing”. Having met Lucy I know that this is a fear that will never be realized as she is already making a difference and is determined to continue to do so. As she strives to make a difference, and to live a good life, she is keen to remind people that “children’s palliative care is not just about dying, it’s about living well.”
At ICPCN we are privileged to have Lucy as our first Global Youth Ambassador, and I look forward to meeting both her and her mother Kate, on future occasions. You can read more about Lucy on the ICPCN website.