INTERNATIONAL CHILDREN’S PALLIATIVE CARE NETWORK

Media Release: Touching Rainbows – Acknowledging the Child’s Voice in Palliative Care

To mark World Hospice and Palliative Care Day 2011, with Voices for Hospices (8 October 2011), thousands of people in around 80 countries will be coming together at more than 1,000 events to celebrate, support and speak up about hospice and palliative care.

This year’s World Hospice and Palliative Care Day theme is ‘Many diseases, many lives, many voices –palliative care for non-communicable conditions.’

The ICPCN decided to use this day to launch its new book ‘Touching Rainbows - Acknowledging the child’s voice in palliative care.’ Through this book we have the
privilege of hearing the voices of some of the many children whose lives, and those of their families, have been affected by life-threatening conditions.
The children tell their stories with honesty and openness, through stories, poems and pictures.
Children and their families from across the world share their experiences, either from the child
themselves or, when their own voice cannot be heard, from those who love them, such as their parents or brother and sister.
The stories, told in the child’s own language wherever possible and with an English translation, are an inspiration to us all. It is hoped they will touch and enrich the lives of many, encourage those travelling a similar path, and instill a sense of courage and joy, despite the many challenges and heartaches. These children and their families pass through many storms and dark days, but still aspire to reach our and touch the light and joy of the rainbow.

The Foreword is written by Sr Frances Dominica, the Founder of Helen and Douglas House, and of the modern children’s hospice movement.


Copies of this book will be distributed around the globe for advocacy purposes and can be bought through the website.
All proceeds from sales will be used for the printing of further copies.
To purchase your copy, go to: www.icpcn.org.uk

For further information contact Sue Boucher sue@icpcn.co.za ; Joan Marston joan.marston@icpcn.co.za or Barbara Steel admin@icpcn.co.za


Linked to the book “Touching Rainbows” and for World Hospice and Palliative Care Day will be the release of a short video on “Paediatric Palliative Care”
A film on Paediatric Palliative Care is film 21 of 50 in the LIFE Before Death documentary series about the global crisis in untreated pain and the dramatic life changing effect palliative care services can deliver to patients and their families around the world. In this short film we discover that the barriers to paediatric palliative care are very complex and children’s pain is often under treated. We learn that providing good care is crucial to the quality of life for the child but that support needs to be extended to the whole family.
“I think that in the paediatric population pain is more frequently under recognized and under
treated than it is in the adult population, though the medications are available, sometimes the
training for physicians is a little bit inadequate and physician’s feel unsure in their ability and concerned about the medications,” reflects Dr Kim Bower (USA).

Joan Marston recounts the story of a young girl with severe pain and with a neuro-degenerative condition being denied the amount of morphine she needed for pain control by a pharmacist who felt she must be an addict until he actually went to the girl’s bedside to see for himself, only to realise how wrong he was.
Hear this and other stories of children’s lives being changed by
accessing palliative care.

Featuring:
Dr Kim Bower (USA)
Joan Marston (South Africa)
Dr Henry Ddungu (Uganda)
Jareal Bantilan (Singapore)
Jessica,Hendra & Esther (Indonesia)

50 Short Films have also been
produced which are being released
at a rate of one per week, they are
currently available to watch at:

www.youtube.com/lifebeforedeathmovie





Joan Marston
Chief executive: ICPCN
Cell: +27 (0 ) 822964367
E-mail: joan.marston@icpcn.co.za

This is Jonathon with his new Mum & Dad, they are his foster parents here in Changsha, he will live with them until he is adopted. They also have 2 other boys so he should become a great brother. see more at
http://drewandrachel.blogspot.com

Hong Kong Trip

Thank you for all your thoughts and prayers, as you may of heard all the tests were done And no surgery needed on Alan, just medication......…its working well now!

We thank you as while we were in Hong Kong we made contact with lots of friends, not all sorry to say, as time was limited and you know how BIG HK is, but we gave some presentations, also had several positive meetings, one meeting we were able to firm up the registration in HK, and should be done this year. Alan will need to return to see the Dr in three months so hopefully we should be able to get a bank account there too.
Lyn had a birhtday there so we started the day with a Starbucks! Only after shutting the door of the apartment we realised we did not have a key! But we continuied on the birthday and had a great lunch at Discovery bay with just about enough cash to get us back home, where Andy had come back from work. So all in all a great time and to top this we struggled to pack as much medicine and milk that had been donated for the babies, we left a case to come up later in the year! How great is that, blessings overflowing!

Thanks & love Alan & Lyn

Hannah's Birthday

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Happy Birthday Hannah

 
Hannah - the birthday girl!

The amazing beetle cake.

Thomas

 
Ysmael

Jesse

Patience

 

 

 

 

 

Jonathon

Our family

ANNIE

JESSIE

WILLIAM

BENJAMIN

HANNAH

LITTLE SWALLOW

PATIENCE

JONATHON

ANGEL

PAUL

YSMAEL

SARAH

THOMAS

Moving in the right direction

Ater being here for 18 months, Great news at the meeting, there has been a verbal acceptence from the powers that be, we will be registered as the Butterfly Home, 蝴蝶之家 （Hu Die Zhi Jia） sounds like (who day jur dhaa) we now after wait for the paperwork, but we feel this is such a big step.
so keep encouraging us please

Cycling For Butterflies

Welcome to Cycling For Butterflies

Our aim is to raise money for Butterfly Home, a palliative care centre located in Changsha, China. In order to do this we are undertaking a sponsored cycle in central China from the 5th September 2011.

Butterfly Home is dedicated to the care of abandoned terminally ill children. Ranging from only a few months old to their teens, children are brought to the centre with poor diagnosis and limited methods of treatment. Butterfly Home provides the children with basic medications for their individual illnesses, 24-hour one-on-one care, and most importantly gives them the feeling that they are loved. Donations to the Butterfly Home will go towards life saving operations for children in the centre's care, and enable the centre to expand it's life changing community care service for local families.
Cycle Route

The route we have chosen for our cycle is approx. 750 Km / 466 miles, which we aim to complete within 10 day. We are touring central china utilizing only map and compass for orientation. We will mainly follow a section of the great Yangtze River upstream. The Chinese like to say, “If you haven’t travelled up the mighty Yangzte, you haven’t been anywhere”, so there we are - being somewhere. We begin in Anqing, a city south of Anhui Province on the north shore of the lower Yangtze, 500km into mainland west from Shanghai. With the river on one side and mountains on the other we cycle through the Yangtze valley towards Hubei Province. Before the Three Gorge Dam we turn off at Dongting Lake to head south to Changsha, one of the areas devastated by the extensive flooding that occurred in parts of China earlier this year. Our route will end with a knock on the door of Butterfly Home care centre, symbolically handing over the donation

Lana Garriock

When I was given the opportunity to study in China in September 2010 it was an offer too good to resist! 5 days later I found myself registered on a 12-month crash course studying Chinese at Zhejiang University and on a plane to Hangzhou, China. While looking for a more meaningful Chinese experience related to my degree in Research Psychology I came across the Butterfly Home. I found their work inspiring and decided to volunteer at the centre at the end of my studies. After speaking to Alan at the Butterfly Home, I had the (brilliant) idea of a sponsored cycle to raise money for the centre before starting my work there.
Neil Clarke
A good pal is always there for someone who proposes a 700km cycle in a foreign country on the other side of the world. Initially Lana's proposal to cycle Up the Yangtze river filled me with an equal measure of confusion and apprehension, however after reading up on the Butterfly Home and the fantastic work they are doing in China I decided to agree to the challenge. After three months training on the rough and ready roads of Fife, Scotland, I feel prepared for anything even the most irate Chinese lorry driver can throw at me, and the warm feeling inside from all the generous donations you lovely folks are going to give will be more than enough to propel us across the finish line. So dig deep folks, and do it for the kids.

Never an easy life

This little fellow is Paul. He’s a handsome boy, whose smile will melt any heart. When he is not asleep, he is always on the move. We are hoping that sometime soon he will be adopted. What a joy he will be for a family looking for some extra fun and cute little boy mischief.
Pauls story is one of sadness, healing and redemption.. He came to us at one day of age, urgently needing surgery to save his life. The costs were high, and the money wasn’t sitting in the bank, but we knew we had to respond. He had major abdominal surgery locally, and then further treatment in Beijing. At the local hospital, they recognized him because of his condition, and we were able to learn something of his background. His birth mother was very young and very poor – even with an offer to pay his medical bills, she was not in a position to raise her baby. She made the heartbreaking decision to walk away, hoping for someone else to love her boy.
After some complications with wound healing, Paul has grown to be a cheeky fun loving little guy. He is healthy and affectionate, with a talent for socializing. The scar on his tummy tells the story of his rough start, but his radiant smile is what will carry him into the future. We are looking forward to the day he will be welcomed into a new family, and that young mother’s dream for her boys future will come true.

Paul

This ia Paul, almost a year old, bright and lots of fun, eats everything! and always up for a game. His paperwork is going forward so he needs a new Mum & Dad too.