19 MarVolunteer Lily visits our home.

Lily is one of our UK volunteers who visited our home last year. Here is what she had to say about her journey to joining Butterfly Children’s Hospices and her visit to Butterfly Home.

“After learning more about Butterfly online, I soon felt very inspired by their work and wanted to help contribute in some way. I was welcomed into the voluntary team to start volunteering from home. I met other volunteers via video calls from all over the world. It felt great to be a part of an international team. Then in September – October 2018, I travelled to Changsha, China to visit the Butterfly Home.

Changsha has a lot of development plans in place as a city overall, especially in healthcare. Recent developments include a children’s hospital known as Hunan Provincial Children’s Hospital and as of 2017 Butterfly partnered with the hospital staff to help support families with children who need palliative care.

The Butterfly Home is affiliated with the local orphanage, close to the Hunan Provincial Children’s Hospital. All of the children at Butterfly Home arrive from the orphanage.

 

On my first visit to Butterfly, I met the head nurse, Molin, who took me around the home, starting with the pink room which includes a recreational area, sleeping area, kitchen and bathroom facilities. I met the ten children who live here: Ronan, Felix, Hailey, Jesse, Jonah, Julie, Karis, Reuben, Wesley and Zach. Some of the children have been in the home for 5+ or so years, while others for much less time. Ronan has just celebrated his first birthday.

All the children have quite complex medical conditions in addition to other issues including difficulties in gaining weight, mobility impairment and no sight or visual awareness.

However, the children have a strong relationship with their carers who look after them daily. Continuity of caregivers and building attachment is very important for the children.

We then visited the green room which has the same facilities as the pink area. I met the eight kids who live here: Charles, John, Austin, Noah, Elora, Edmund, Tom and Snowy. Again, the children have complex medical conditions. Some have been here since shortly after birth while others have joined later in their lives.

Two of the children, Noah and Charles, have a complex condition called hydrocephalus where fluid builds up in the cavities of the brain. Both children have been to Shanghai for surgery and have a shunt placed in the brain which helps to control the fluid. As a result their everyday abilities are restricted, but this does not stop their personality shining through and they learn to do things their own way. Their futures are quite uncertain but we hope one day they could find a forever family of their own and be adopted.

The Butterfly Home has a nurse on-shift 24/7 with a separate room with all the children’s files and their medical requirements. It was great meeting the nurses and learning about the children and their transformations since arriving to the home.

I was also lucky to meet the doctor and surgeon who work with BCH and regularly check all the children’s health in the home.

A few weeks before I arrived, a 12-year old girl called Snowy came to the Butterfly Home. Snowy was incredibly malnourished and ill. The doctor checked her over with the nurse and discussed the best plan of action to improve her health.

A child called Tom had been learning to walk but struggled to flatten his feet from his past health conditions and the impact this had on his development as an infant. The nurses organised some braces to help align his feet and develop his walking. By the end of my visit, Tom was able to kneel and pull himself up to stand.

 

BCH recently opened the ‘Butterfly Wing’ in the high dependency area in the orphanage. This project represents the bigger visions and new directions of BCH to help even more children and the developments in China with nursing staff and healthcare.

I also attended Hats On for Children’s Palliative Care event organised by Naomi Fu, PR manager and the Butterfly team. The event helps raise awareness of the need and importance of children’s palliative care and the work of Butterfly. I visited Yale School and met some of the students who were fundraising for the event. It was great to see their commitment and drive in supporting Butterfly Home.

The Butterfly Home is a very special place, one that transforms and enriches the lives of so many children. I feel very lucky to have been given the chance to visit and want to say a huge thanks to the Butterfly team for this opportunity!”

To learn more or find out how you can get involved and help support Butterfly Children’s Hospice, contact info@butterflyhospice.org.

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