Lucy's story

24 May 2019



Lucy and her family stayed in the Bereavement Suite at Demelza South East London after she died.

As a baby, Lucy was diagnosed with interstitial lung disease of an unknown cause. She was on oxygen from 9 months old and was unable to walk, so depended on a wheelchair to get around.

In December 2013 Lucy’s condition deteriorated and she was moved from Great Ormond Street Hospital to Demelza Children’s Hospice in Eltham. Lucy remained at the hospice for four months before sadly passing away in her sleep in March 2014, aged 6.

Lucy’s mum, Lynn, spoke to us about the care that the family received at the end of Lucy’s life.

“Lucy’s room in the butterfly suite was the same as her bedroom downstairs – filled with fairy lights, toys and dolls. We wanted it to feel like her room. 

We chose to have her favourite music playing so that the room wasn't so quiet and it felt like Lucy had company when we were away from her. We spent a lot of time with her and loved the fact that we could be with her day or night. It was such a difficult time and the emotions would hit us frequently and this flexibility of being able to visit her, talk to her and hold her as often as we wanted - and whenever we wanted - was invaluable. If Lucy had been in a traditional chapel of rest we wouldn't have had this opportunity.”

The Bereavement Suites have a Quiet Room nearby; a comfortable and tranquil lounge which allows additional family members to visit, but also provides a space for families to make their funeral arrangements in private, but with their child still close.

“It would have been a completely different experience for our family if we hadn’t had Demelza - they gave us the support we needed, when we needed it. It would have been harder to face everybody and everything at home. Our time with Lucy in the Bereavement Suite gave us the break that we needed to get our heads around everything.

Coming home from Demelza a week after she died was hard. This time I came home from Demelza with an empty wheelchair. That was tough. Lucy loved her pink wheelchair. The physical signs of Lucy’s presence are gradually disappearing but even bigger than that is the emptiness. In the blink of an eye, I lost my child and I also lost everything that revolved around keeping her alive for six years.

Without Demelza I wouldn’t be who I am today. I will always be grateful to them. Demelza kept Emily, my dad and me going and supported us as a family. They welcomed us to stay for another week and even helped arrange Lucy’s funeral.  The care Lucy and my family received from Demelza was outstanding - they supported us when we needed them the most. Demelza will always be a special place to our family.”

You can help us to support more families like Lucy’s who need space, time and comfort when their child dies. Please give what you can to our Bereavement Suite Appeal. Visit www.justgiving.com/campaign/bereavement