Nazmi’s Story – Prospering with a Genetic Disorder
Read an update from Nazmi here
“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 www.hospismalaysia.org
– Dr Ednin Hamzah
– Dr LeeAi Chong
– Devaki Krishnah
– Hamidah Abdul Aziz
– MD Nizam Mdsom
“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,...
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...
The ICPCN is the only international organisation that networks individuals and organisations that work in children’s palliative care. We share a vision that the total needs of life-threatened or life-limited children should be met to...
BLOEMFONTEIN , SOUTH AFRICA Sunflower Children’s Hospice was established 15 years ago as a response to the increasing number of children with HIV and AIDS at that time, as well as many children with a variety of life-limiting conditions. The...
Short Film 1 - 'Value Every Life' introduces us to children's palliative care and hospice. It features Joan Marston, Chief Executive of the International Children’s Palliative Care Network, and the staff and children of Sunflower House in...