“It was a searing hot summer day in central China 1997, still in the times when as a volunteer to Chinese orphanages we took our own toilet rolls as there was no such thing in the shops. Life was very basic, shops empty and people struggling for every jiao. Our volunteer team arrived at the orphanage and were welcomed into an old style single story row of one room dwellings with shared toilet house. The walled courtyard had an open sewer running through, full of foul sludge which was hosed down every now and then. The flies were everywhere and the smell – pungent! Still the children and staff welcomed us and we settled in to assess the situation and see how we could help.
As we split into medical and non-medical groups I headed over to the far corner where I could see two little children, naked and sitting on iron potty chairs facing the wall. They were tied in, hot, sweating and very quiet in the full sunshine. Peter was aged about 2 years old and showed signs of spastic cerebral palsy whilst Hope (age about 4 years) was very sick, having seizures, very unhappy at being touched and swallowing fluids with difficulty. Getting scans and medical tests in that very poor setting was difficult and all we could do over the 2 weeks we were there was to feed, love and play with Peter, which he enjoyed hugely, rewarding us with big smiles and even grabbing a toy and throwing it with a mischievous smile on his face during the party at the end of the second week. Hope looked to have been a normal size and development but was now in a desperate state. We got a CT scan which showed a brain condition – hopeless at that time and in that place. All we could do was bring him into the cool every day, give him paracetamol and soothe, sing to and calm him. It was heartbreaking to leave him.
Having been back to that same orphanage many times over the ensuing years it was a joy to see Peter growing – although very physically disabled he was a spirited and determined young man, being cared for by another NGO in a shared home setting. I am sure that being there in 1997 giving him loving care and affirming the worth of his life, saved him for a future. I never saw Hope again, but he left an impression on me forever. I knew through the lives of these two children that we could do something and that something has led to us forming BCH, opening Butterfly Homes in orphanages and pioneering loving palliative care for children who would otherwise die alone and unloved.”
The Butterfly Children’s Hospices have now cared for over 120 children; some have received loving end-of-life-care while others have gone on to be adopted by loving families. The charity now works in partnership with local and national government and medical professionals to scale their palliative care model to different communities across China. They held the very first children’s palliative care conference in China in 2015, and are busy developing an even bigger conference for a few weeks’ time. The charity are also undergoing one of the largest translations of children’s palliative care handbooks to be used in hospitals throughout China. It’s a far cry from how things were in 1997, but the team are fully aware of just how much there is still to do.
“Initiatives like ICPCN’s #hatson4cpc campaign highlight just how many children worldwide who are still in need of palliative care, and just how much public awareness still needs to be raised.”
As they celebrate their ten year anniversary of forming the Butterfly Hospices they are asking supporters to get involved with their #butterflykites appeal; this is to raise vital funds to keep the Changsha hospice open to as many children as possible.
To make a donation you can do so here: https://www.justgiving.com/campaigns/charity/butterfly-hospices/chinabutterflykites
Or read more about their ten year story here: www.butterflyhospice.org/10years