Why should children suffer?
“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).
WHY SHOULD CHILDREN SUFFER?
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.
Children’s palliative care is a response to the suffering of a child and their family facing life-threatening 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.
These remarkable stories show young people finding hope, love, joy and attainment in the face of the inevitable.
“Governments all around the world should wake up and recognise the needs of these children,” Barbara Gelb.
Featuring Sister Frances Dominca, Brabara Gelb. Dr Rasha Al Hamad, Dr John Collins, Dr Stephen Liben, Dr Anna Gohcakova, Dr Lee Ai Chong, Joan Marston, Dr Pradnya Talawadelear, Dr Rut Kiman, Silvia Lefebrvre D’Ovidio.
This week we are pleased to be supporting the release of a short film that encourages sharing skills and knowledge of children’s palliative care internationally. This film explains what we can learn together by international linking and...read more
Care Beyond Cure – Ondine's Syndrome “One of the things I remember when we first met Matteo was the phrase ‘we are giving you a baby who is alive’ that phrase meant everything and nothing, it meant that Matteo could die at anytime. Children...read more
Hope and Hyperinsulinism in infants “Don’t be afraid that things like this happen, I believe that every obstacle that is given to you in life is there so you can overcome it and become stronger.” Lana Krupenrova, Anastassia’s Mother....read more
Thriving with Thalassemia Major "I believe it's the quality of life, it doesn't matter how long I may live, but if I live well, I would have lived well. I believe these children also think the same way and want fun, want enjoyment, want...read more
"Just the sheer fact that someone as high profile as HRH Raja Zarith or HRH The Duchess of Cambridge are both serious and passionate about this movement automatically makes it a subject worth discussing." Gail Featherstone, Wife of the...read more
“When you realize how uncertain life is , you do begin to appreciate the value or family and friendships and enjoy those moments while you have them because you don’t know what’s around the corner,” Simon Waring. Marmaduke’s Story highlights...read more
"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...read more
“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...read more