Nazmi's Story - Prospering with a Genetic Disorder

"I honestly feel that there is no need for euthanasia at all. I think it is looking at suffering and end of life care in entirely the wrong way. There are many, many solutions in suffering and euthanasia is perhaps a cop-out". Dr Edmin Hamzah, Medical Director Hospis Malaysia


"Sometimes people just concentrate too much on the downside of things and we forget that Nazmi is doing a lot of incredible things and we should support him through that." Dr Leeai Chong, Palliative Care Doctor.


Nazmi is 15 years old and lives in Malaysia. Nazmi has Spinal Muscular Atrophy (SMA) Type II so he has a progressive degeneration of his muscles.


Nazmi tells us "SMA makes me weak physically but it doesn't affect me mentally."


"He has been in a wheelchair since he was eight so he loses his power of his lower limbs and he gradually will lose power of his upper limbs so right now he can't comb his hair or wash his hair but he is able to brush his teeth or feed himself. That will slowly deteriorate and so he will not be able to do a lot of things for himself later on as time goes by." Dr Chong


"We are very proud of him, he is a very intelligent child" Nazmi's mother Hamidah Abdul Aziz tells us, "very cleaver and smart, it's so easy for us to care for him, we would follow his wishes."


"With SMA I try to remain happy and play chess to forget about my illness." Nazmi tells us.


"Very good chess player. He is a very good chess player. When I saw his books, it was alien to me the things that he was doing. I'm not very good in chess. I just play basic. When I saw this, "Oh you are very good Nazmi" and he said "I practiced this." Devaki Krishnah, Nazmi's Teacher.


"He is a really hardworking person and he follows instructions very well. That's why he was top of the class in English last year. Then I had to teach the hearing impaired students I used to ask him, "What do you say? How do you sign for this?" Now he communicates with them like normal daily every day easy for him. He doesn't find anything difficult in it, so he will learn very fast. That was very interesting." Devaki Krishnah, Nazmi's Teacher.


"He knows his life will be shortened and yet he has chosen to challenge himself. He has only picked up chess two years ago and in two years he has won a medal for the country." Dr Chong "Then that's not enough, he goes on to learn blind chess. I mean how incredible is that? Who would push themselves so hard?"


Please consider supporting the important work of Hospis Malaysia


Dr Ednin Hamzah
Dr LeeAi Chong
Devaki Krishnah
Hamidah Abdul Aziz
MD Nizam Mdsom


Treating Chronic Pain in Children

“Taking pain away is not really rocket science, it’s not that difficult.  If we can teach any residence, any junior doctors in one or two hours to manage 90% of children with acute pain.  However most children’s hospitals have not yet implemented even the standard methods of taking acute pain away.” Dr Stefan Friedrichsdorf, Children’s Pain Expert.


In Minneapolis, USA we meet Dr Stefan Friedrichsdorf and his inter disciplinary team and learn what chronic pain in children means and how chronic pain is treated in their unique pain clinic.

Life Is To Be Lived

Guest Blog: Dr Chong Lee Ai, Paediatric Palliative Care, Hospis Malaysia


Life is to be lived. That’s how Ahmad Nazmi keeps going.


Disabilities do not hinder him from dreaming. Having a life-limiting illness does not stop him from striving to achieve goals and setting new ones. His sister had the same illness and he saw her die as a teenager. She is his inspiration and his parents are his constant support.

Read more…

Together for Short Lives

Guest blog:  Lizzie Chambers.  Development Director, Together for Short Lives.


There are an estimated 49,000 children and young people in the UK living with a life-threatening or life-limiting condition that may require palliative care support. This number may seem small compared to the global need, but for each child and their family, the impact on their daily lives is huge.
Together for Short Lives is here to help make sure that every one of these children and young people and their families gets the best possible care whenever and wherever they need it.  Read more…

True love against the odds – Little Stars Greece

Guest Blog by Mike Hill (Filmmaker, Little Stars)


After visiting 10 countries to capture stories with dozens of families about children’s palliative care you might think that it would be impossible to surprise me.


Not so. In Greece, I found a story – more specifically, a love story – so remarkable that it touched my heart and affected me profoundly. Read more…