Nazmi’s Story – Prospering with a genetic disorder

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In this latest Little Stars short video we meet Nazmi, a 15-year-old boy with Spinal Muscular Atrophy (SMA) Type II who lives in Malaysia. Nazmi has a passion for chess and for learning. He lost a sister to the same illness, but still remains positive and constantly looks for new challenges.

SMA is a disease that causes the progressive degeneration of his muscles. Despite all the challenges of his condition, Nazmi has become a champion chess player and has already won a gold medal for his country. This was much to the surprise and delight of his proud parents, who have never played chess themselves. He has also picked up signing for the hearing impaired and his teacher is amazed at his ability to communicate in this language.

Talking about his condition, Nazmi says, “SMA makes me weak physically but it doesn’t affect me mentally. I try to remain happy and play chess to forget about my illness.”

Dr Leeai Chong, his palliative care doctor, explains that Nazmi has been in a wheelchair since he was 8 and has gradually lost the ability to move his lower limbs and will also gradually lose the power of his upper limbs. At present he is not able to comb or wash his hair but he is able to brush his teeth and feed himself. These abilities will slowly deteriorate until he is not able to do much for himself.

“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,” says Dr Chong.

Devaki Krishnah, Nazmi’s teacher tells us that he is a very good chess player. She also says that Nazmi works extremely hard and follows instructions well. She says “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.”

Dr Chong praises Nazmi for his perseverance and positive attitude in the face of his condition, saying, “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. Then that’s not enough, he goes on to learn blind chess. I mean how incredible is that? Who would push themselves so hard?”

Nazmi’s story shows that it is possible to live life to the full, despite a life-limiting illness and he thanks Hospice Malaysia for how much they have supported him and his late sister. In his words, “As long as I am still alive, as long as I am not dead, I will continue to live.”

Please consider supporting the important work of Hospis Malaysia.

Featured in this video are:

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

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