Lucy's Story

"I remember a feeling of being able to breathe for the first time in days, every member of staff made us feel that we were not facing this alone."
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.

I will always remember Lucy's final Christmas at Demelza, when they opened up the Eltham hospice especially for her. It's usually shut but they opened up for our family so that Lucy had somewhere to stay.

When we moved from the hospital to Demelza, not knowing how long Lucy would survive or what to expect, it was a great relief to receive support and gentle guidance at the hospice. I remember a feeling of being able to breathe for the first time in days, every member of staff made us feel that we were not facing this alone. The whole family were also able to spend time together at the hospice, which was especially comforting for Lucy’s 16 year old sister Emily. 

The staff at Demelza made it all Christmassy in Lucy’s room with a tree and decorations. Lucy didn’t go to bed until six in the morning on Christmas day because she was so excited. Demelza did us a big breakfast spread and then when Lucy woke up they dressed like Father Christmas and gave us all presents, and the staff sat with us as we had our dinner. They just made it nice. They gave her a message from Father Christmas, so she thought that he knew about her and where she was. She loved it. I used to like Christmas, but since my daughter passed away I don’t really like it as much as I used to.

I still miss buying her stuff. She used to like leaving the carrot out for the reindeer and the mince pie out for Father Christmas. Obviously I can’t do that anymore. Her last Christmas was completely magical thanks to all the wonderful staff at the hospice. The memory of that special day has given me great comfort since Lucy died. They opened their doors at Christmas to me and my family. They left their families to come and look after Lucy. I didn’t expect to make Christmas with Lucy and they gave us special memories I will treasure forever. 

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.