PETALING JAYA: 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. But Duchenne muscular dystrophy (DMD) sufferer Nur Fazira Jamhari has learned to take it a 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. Then 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 26, while her sister, Siti Nor Aishah, is 23.
But more than just staying alive, Nur Fazira has learned to become financially independent. She has a successful business that she started in 2009 as a henna tattoo artist.
A person with DMD lacks mobility and speed, so Nur Fazira moves in a “slow motion” pace.
“Even picking up a cup requires great effort, so can you imagine how long I will take to paint henna tattoo for a client?” she told theSun in a recent interview.
She said her business started to pick up when she made a successful pitch last April and won second place in a programme organised by Selangor Youth Community, a non-governmental organisation.
“Thanks to that pitch, I am now able to produce a variety of products and to ramp up my business,” she said.
She said she normally gets five customers a month and earns RM400 to RM500. Her best was RM1,000 a month.
She now has her own henna product-line, comprising henna hair colouring, nail polish, nail-dip and henna cones that she sells through her Facebook page ‘Zerra Art Design’.
Her day begins with a personal helper assisting her in cleaning up and getting dressed. Work starts at 9am and she packs up for the day at 6pm.
Nur Fazira takes a lot longer to finish each piece of work, too. “A henna artwork for a bride normally takes about two hours to complete, but it takes me double that time,” she said.
She is thankful for the support from her family. She said sharing the challenges with her sister, who is also a DMD sufferer, helped to ease the pain. But Nur Fazira has ensured that the lack of mobility and other issues related to DMD did not have a deep impact on her quality of life.
She does most of her chores by herself, including taking public transport and going shopping. For that she has an electric-powered wheelchair.
She attributes her strength to hard lessons learned from her mother, whom she lost just days before Hari Raya last year.
“She used to carry me to school when I was young,” she recalled.
She now has a philosophical view about life. “It’s like being on power-saving mode for your smartphone. It’s not a reason for me to give up on life.”
