By Mohamed Harees –

Lukman Harees

‘Nothing stops the man who desires to achieve. Every obstacle is simply a course to develop his achievement muscle. It’s a strengthening of his powers of accomplishment’– Thomas Carlyle

It was days ago that the nation received the distressing news of the sad demise of  Irfan Hafiz, a differently abled ‘keyboard warrior’ as he was referred to, about whom most came to know and discovered how talented he was, only fairly recently. It was not many months ago that  Irfan rose into prominence when the local media and social media highlighted his inspiring story- a silent fighter, who despite being completely bedridden suffering from a rare disease called Duchenne Muscular Dystrophy (DMD) for the past twenty six years, typed entirely on his iPhone with just the little strength in one finger and authored three books– Silent Struggle and Moments Of Merriment (Stories of children ) and another – his third  book Silent Thoughts. Sounds unbelievable and stunning! but it was true; a life episode of an amazing young man, who was God conscious, persevering and who never gave up amidst life’s hard struggles. The story certainly lifted many distressed hearts, raised eyebrows and provided many motivational lessons and a healing touch of renewed faith  particularly to thousands if not millions, of youth both in Sri Lanka and even beyond, who may be losing hope in a gloomy world with depleting opportunities for them to forge ahead. Irfan sadly lost his long battle with the disease and passed away very peacefully at the age of 37, having answered the Call from His Creator, leaving his fast expanding fan and admirer network in deep grief and extreme sadness. To God we belong; to him shall we Return. 

I thought of penning some reflections from a greatly uplifting life story of  Irfan, who has left an indelible mark in the annals of time, by surmounting many obstacles to reach an enviable pinnacle of achievement in the area of authorship and writing, of Himalayan proportions. 

Irfan Hafiz

Irfan, was born in Matara in 1981 and was the third child of eight children. His father Hafiz Issadeen  is a retired Principal, an administrative officer and an Editor of “Arumbu” Educational Magazine. Mr. Issadeen, the dad was an inspiring figure too, and did not give up on his mission to help others afflicted with this dreaded disease DMD. He was the president of Parent Project MD-Sri Lanka and was instrumental in organising the first ever National Muscular Dystrophy Parents Convention in Sri Lanka, at which event, all important latest developments in the medical research on DMD and other MD diseases were shared.

Irfan maintained a regular flow of motivational ideas and shared inspiring facets out of his hard struggle on his FB Page under the name ‘Silent Fighter’. They capture the immense struggles he has been going through which indeed are really inspirational. Some of them I wish to share here. He said,

‘Since it was informed that DMD had no permanent cure, my parents were going through a very complicated period. Our neighbours and relatives had started to drive us mad with their various suggestions and advice. My parents had no option but listening to some of those suggestions. I was taken to native doctors, spiritual healers and even to a sorcerer but every effort went in vain. I had to miss many months of schooling while I was getting treatment from a native doctor’.

‘I became chair-bound at twelve years old and since then my life became very boring and some kind of frustration crept in to my mind. My movements were restricted and the things I wanted to do became almost impossible. It made me very irritated. However, I did not realize that I had developed an inner frustration in my mind but it came out in my behaviour..’ 

‘The weakness of the muscles that help breathing is caused by the progressive loss of strength in all my muscles and it is one of the main affects of DMD. Since then, I spent the most of my time in bed and did not get on to wheelchair often. As days passed, I became totally bedridden’…’I transformed in to a matured boy along with the time of woeful life. I could slowly but clearly realize what was in store for me in the future. My father used to sit beside me and would explain what life is all about and how we must prepare ourselves to face this life….During this period, when everything looked gloomy for my family, there dawned a distant light! My paternal uncle found about the Duchenne Parent Project in USA through internet. He got our family registered on behalf of my father…’

‘The progressive muscle weakness due to DMD, leads to serious medical problems, particularly issues relating to the heart and lungs. As my lungs got weaker, things became very hard for me. Whenever I had cold and phlegm, breathing got worsened. I felt hard to cough as my lungs are weak. Thanks to my Lord, my life was saved when I had to go through a very difficult period..’

The firm belief in my religion and the enormous trust in my creator have let me build a strong will power to accept the tough challenges of this life happily, Alhamdulillah. I’m strong enough to say that any difficulties or grievances would never forsake either my courage or faith at any moment, at anytime. I sincerely think that Duchenne has taught me patience and tolerance in my life. Duchenne has united parents all over the world. Duchenne has helped us identify good people in this world. Duchenne made us to know that still there are a lot of amazingly generous men and women in this world. Duchenne has specially helped me to identify true friends of life!’… Great story indeed!

It was really amazing how he persevering he was , to have authored three books nevertheless, just by using one finger and being bedridden and on oxygen. I listened to the great inspirational speech he made at the launch ceremony of his last book, lying on a stretcher. The gems  he shared at this event brought tgears to my eyes, and may have surely led the audience too to tears- the way he expressed how he overcame the difficult patches of his life to achieve what  he achieved and the great trust and confidence he had on the Divine mercy was phenomenal and beyond words.   

He was thus indeed a positive role model not just for those with different abilities, but even for those without as well. He helped others to learn the challenging art of coping and achieving in the face of adversity. Irfan indeed leaves an abiding legacy which will continue to inculcate apt motivating lessons to all of those so inclined to move ahead in life, which will stand relevant, way beyond his short but ‘qualitatively rich’ span of life which sadly ended recently.    

May Almighty Lord grant him the highest stations in afterlife and may his supporting family be blessed with the highest levels of patience and Divine mercy and reward .