Anastassia’s Story – Hope and Hyperinsulinism
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.
Taabish’s Story – Thriving with Thalassemia Major
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 creativity, want to live life to the fullest as much as they can. ” Prof Mamta Manglani, Head of Pediatrics at Sion Hospital, Mumbai, India
Linges’ Story – Royal Palliative Care Advocacy
“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 Former British High Commissioner to Malaysia.
Marmaduke’s Story – Childhood Cancer
“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 the importance of holistic care for all members of families containing children living with potentially life-limiting illnesses. We hear the first hand account of family members reflecting on the importance of children’s palliative care, including home-based care and effective pain control for childhood cancer patient Marmaduke from Melbourne, Australia. (more…)
Kali’s Story – Beyond The NICU
“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. (more…)
Children’s Palliative Care – Charlie’s Story
“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…)