VALUE EVERY LIFE

"Paediatric palliative care in its essence is a response to the suffering of a child and a family who are facing life-threatening or life-limiting conditions It's holistic, looking at the body, mind and spirit within the social and cultural context. It cares for the child from the time of diagnosis until death, and after death it does bereavement support for the family " Joan Marston.

 

This Accolade Award-winning short film introduces us to the paediatric (pediatric) palliative care and children’s hospice. It features Joan Marston (international Children’s Palliative Care Network) and the staff and children of Sunflower House in Bloemfontein, South Africa.

 

VALUE EVERY LIFE

 

Regrettably, not all conditions can be cured. However, many children with life-limiting conditions will live for years, if not decades. Currently, 20 Million children around the world can benefit from palliative care, but access to services remains an issue (ICPCN). Children are particularly at risk of inadequate pain management due to age related factors, limited access to essential medicines and misconceptions about how to effectively treat their pain. These vulnerable children and families are suffering. They are largely invisible. But for those who are receiving care, the results are extraordinary.

 

"All of us live in a death-defying society. None of us like to think about our own dying, even as we get older. And when we think of a death of a child it seems to go against the laws of nature. Every child's life as value. It doesn't matter whether that child lives for a day or until they live in their early thirties, every moment is precious and valuable. And palliative care actually values short lives," Joan Marston.

 

Featuring Joan Marston.

 

www.icpcn.org

 

CHARLIE’S STORY – COMING SOON 7 JANUARY 2015

“The death of a child is considered the worst loss you can go through and I think that’s particularly true of the families I’ve worked with ” Natasha Samy, Social Worker & Bereavement Counsellor.

 

This short film tells the story of Charlie and his family from Sydney, Australia.

 

“Charlie has GM1 gangliosidosis and that is a storage disorder that effects nerves results in Charlie being physically impaired and also cognitively impaired,” Dr John Collins. Read more…

KALI’S STORY – COMING SOON JANUARY 21 2015

“The term palliative care often is perceived by some of my colleagues and some parents as giving up hope or working with the death-and-dying squad.  What they may not understand is that clearly using palliative care means that kids actually live longer and better,” Dr Stefan Friedrichsdorf.

 

Kali’s Story proves that children’s palliative care can actually save lives that would have been otherwise shortened and demonstrates the importance of continuity of care throughout the lifetimes of children living with life-shortening illnesses. Read more…

CHRISTMAS BLOG

Guest Blog by Katherine Irene Pettus, PhD

 

Read in Russian РОЖДЕСТВЕНСКИЙ БЛОГ

 

HOW PROVIDING PALLIATIVE CARE  FOR CHILDREN WITH LIFE-LIMITING AND LIFE-THREATENING ILLNESS CALLS IN THE KINGDOM AND BENEFITS US ALL

 

When the heart breaks God can come in.  The wound is the place where the Light enters you,” Rumi.

The Christmas season calls Christians to reflect on what we call the Incarnation, or God taking human birth in a little child destined to suffer and die at the hands of those whose power he threatened. This blog reflects on how we, as community members, can serve the Incarnation in the persons of seriously ill children and their families, bringing gifts, like the Magi, of ourselves, our treasure. Read more…

РОЖДЕСТВЕНСКИЙ БЛОГ

Гостевой блог Кэтрин Ирэн Петтус, Доктор Наук

 

Read in English

 

КАК ОКАЗАНИЕ ПАЛЛИАТИВНОЙ ПОМОЩИ ДЕТЯМ СТРАДАЮЩИМ СЕРЬЕЗНЫМИ ИЛИ НЕИЗЛЕЧИМЫМИ ЗАБОЛЕВАНИЯМИ ОДАРИВАЕТ НАС ВСЕХ.

 
Когда сердце разбивается Бог может вступить. “Рана – это место, через которое в тебя входит свет” Руми (Джалаладдин Руми, выдающийся персидский поэт-суфий).

 

Рождество даёт нам возможность задуматься над тем, что мы называем Воплощением, или Богом рождающемся в младенце, которому суждено страдать и умереть от рук тех, чьей власти он угрожал. Этот блог о том , как мы, члены общества, можем служить Воплощению преподнося, как волхвы дары и самих себя тяжелобольным детям и их семьям.

Read more…