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Miss Independent

DMD victim has learned to take the terminal illness one step at a time

28 Nov 2019 / 20:35 H.

One person in a family suffering from a terminal illness is unfortunate enough. But, to have four of six siblings similarly afflicted is a tragedy. Sunpixman Ashraf Shamsul Azlan follows duchenne muscular dystrophy (DMD) sufferer Nur Fazira Jamhari as she learn to face life one day at a time. DMD is a genetic disorder characterised by progressive muscle degeneration and weakness. It was first diagnosed in 1987. It affects approximately one in every 3,500 newborn baby boys, but only one in 50 million girls according to www.duchenneuk.org its victims may not survive beyond their mid-20s. Nur Fazira had a brother who succumbed to the disease at the tender age of four. Her sister lost the battle when she turned 12. By comparison, Fazira and another sister are the lucky ones. Both have beaten the odds and survived into adulthood. She marked her 30th birthday on July while her sister, Siti Nor Aishah, is 23. But, more than just staying alive, Fazira has learned to become financially independent. She has a successful business that she started in 2009 as a henna tattoo artist .

Her determination to be independent is reflected in her will to be self sufficient.
Her determination to be independent is reflected in her will to be self sufficient.
Nur Fazira chooses as to take public transportation as it is far more wheelchair accessable than a car.
Nur Fazira chooses as to take public transportation as it is far more wheelchair accessable than a car.
Navigating her motorised wheelchair though the many aisles, Nur Fazira shops for groceries and business supplies.
Navigating her motorised wheelchair though the many aisles, Nur Fazira shops for groceries and business supplies.
A short reprive before the trip home.
A short reprive before the trip home.
Nur Fazira crosses the street to get to the train station.
Nur Fazira crosses the street to get to the train station.
MRT staff helps Nur Fazira to get into the train for her trip home.
MRT staff helps Nur Fazira to get into the train for her trip home.
Busses with ramps enables those who are wheelchair-bound like Nur Fazira to be mobile.
Busses with ramps enables those who are wheelchair-bound like Nur Fazira to be mobile.
Her home doubles as her place of business.
Her home doubles as her place of business.
Because of her decade long interest in henna art, Nur Fariza has been making henna designs into her business.
Because of her decade long interest in henna art, Nur Fariza has been making henna designs into her business.
The Raja Muda of Selangor, Tengku Amir Shah ibni Sultan Sharafuddin Idris Shah appreciating Nur Fazira's skills in henna art.
The Raja Muda of Selangor, Tengku Amir Shah ibni Sultan Sharafuddin Idris Shah appreciating Nur Fazira's skills in henna art.
$!Her handywork is the result of her resolve.
Her handywork is the result of her resolve.

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