Demelza Hospice Care for Children provides care for around 650 families, whose children are seriously ill. Unfortunately, Demelza are unable to reach 4 in 5 families that could benefit from their team’s support and because of advances in medical practices, more families than ever are in need of their help. Demelza are doing as much as they can and over the next five years will aim to double the number of families they support, but they cannot do this without your help and
Shortly after Joshua was born it was clear that he was unwell. He had contractures of his arms and legs and was struggling to breath. He was admitted to the special care baby unit which is where Joshua’s rollercoaster life began. I was given the chance to meet, love and care for the most handsome, tough and resilient person I’d ever met.
After exhausting all available tests at the Evelina Hospital and due to Joshua’s declining health, we were referred to Demelza. My initial reaction was one of resistance. I had a view of a hospice as a depressing, bleak environment and I didn’t want my son involved with them. I believed we would be better taking him home.
In spite of my resistance, my wife and I agreed to go along to see the Demelza Hospice in Eltham, South East London. I forced myself to go, believing that I would at least be able to argue against going again, once I had seen the site. We were first taken through to the kitchen area where it was immediately apparent that cake is a major factor in the running of a children’s hospice. We sat and spoke to some of the staff and they talked us through how the hospice functions and the care they can offer. I was still sceptical at this point though; still blinded by my own inaccurate preconceptions about children’s hospices.
We were taken on a tour of the hospice, again something that filled me with trepidation. It was at this point that my opinion changed. The first room we walked into was the main day room. As we walked in, I was confronted with the sight of one of the nurses being chased around a sofa by a young boy in a powered wheel chair. He was giggling uncontrollably. The type of infectious laugh that only a child can produce. From there I realised my views were simply wrong. This was a happy place, a fun place, a child’s dream house! We discussed in more detail the care and support that Demelza could provide, not only to my wife and I, but also my daughter and Joshua’s grandparents.
Whilst waiting for the move to Demelza, Joshua came home from Evelina. His care needs were extensive and during this time, and we were soon exhausted. Joshua was admitted to hospital twice during this time and after the second trip, he was transferred to Demelza where everything changed. I was worried that he was suffering and we really had no time to treat him as our son. Arriving at Demelza essentially gave me my family back. We were suddenly able to all be together and concentrate on just loving him.
The last month of Joshua’s life was the best time we all had together as a family. We were able to play with him each day, hold him and love him. His big sister, Libby, was able to take baths with him and play with him. Whenever she wasn’t running around the corridors dressed as a princess, with the staff that is!
On the 29th March 2011, Joshua passed away in my arms with his mum sat next to us. He passed away peacefully in his sleep surrounded by the people that love him and following the best time he could ever have had. This was entirely down to the support of Demelza. They managed Joshua passing with such sensitivity. We didn’t have to do anything but grieve. Everything was taken care of following his passing and we were guided through this time expertly, with empathy and sensitivity. Joshua stayed in the butterfly room allowing our family to come and see him, and to say goodbye. This was such a painful time, but with Demelza’s help and knowledge, we managed to get through it.
The support provided by Demelza continued long after Joshua passed away, in the form of music therapy for my daughter, through to support weekends and days at the hospice for my wife and I. Despite what occurred at Demelza, it is still a happy place for me to visit. I have only good memories and that time has had such an effect on the life of me and my family. I owe a debt that I will never be able to fully repay. They truly are an exceptional organisation, staffed by some of the most incredible people I have ever met. I’m glad Joshua had the chance to meet them before he passed as I believe he was able to meet and experience the very best of humanity.
Please help Demelza to continue and grow their incredible services so they can reach many more families, like mine, that need their support. Please give a donation of whatever you can today.
Lawrence, Joshua's Dad