Guest Blog from Joan Marston
It has been such a delight to meet up with friends and colleagues from all over the world, here in beautiful Roma but here not to spend all their time visiting the ancient and wonderful sites of this amazing city, but because they care about children with life-limiting conditions. It is a sobering thought that while we are excited to be together, to learn and to share our experiences, there are over 20 million children and families battling with the day to day challenges that such illnesses bring into their lives.
“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. (more…)
“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. (more…)
“In all parts of the world, tragically, there are children who are going to have short lives and in many parts of the world those children are going to die in pain and with other distressing symptoms,” Sister Frances Dominica.
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). (more…)
Life is short, value every moment.
Little Stars is tells the surprisingly life-affirming stories of young people around the world living with life-limiting illnesses. Against the odds, these children and young adults are making the most of every moment thanks to the support of their loved ones, working in harmony with passionate ‘pain and palliative care’ teams. (more…)