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MEDICAL issues and treatment may mean that Fatema Abid Mohsin has difficulty speaking and moving but remains steadfast and determined to have a voice and make a difference.
Her moving account of living with the debilitating muscular dystrophy a disease which causes progressive weakness and loss of muscle mass, is helping other specially-challenged youngsters to cope with their conditions.
With the help of her family, Fatema, 23, from Sanad, has put her thoughts on paper and published a book with the support of her favourite store, Lulu Hypermarket.
“I just want to be an example for emotionally, physically and mentally-challenged young people,” explained Fatema. “I want them to know that they are not disabled - they are differently abled. Never give up and carry on fighting no matter what. Do not put a full stop on life.”
Her book, entitled My Understanding Of Life As I Know It, is being snapped up for BD2 from all Lulu’s six stores in the kingdom. It contains 53 pages of Fatema’s thoughts and perceptions on life, love, relationships and dreams.
It took almost nine years to complete and was recently launched at the company’s popular Ramli Mall.
Fatema, an Arab Open University student, so impressed Juzer Rupawala, regional director of LuLu Group, and other senior members of his team. “The book launch was the first time that we all came to know about this courageous and tenacious young lady,” explained Juzer. “Its content is filled with a joy for living and absolutely no self-pity.
“It was an honour to come across such a brave young lady. Despite the challenges she faces she refuses to accept defeat and has explored her emotions so coherently in the book that she has authored.
“She is certainly an inspiration for us all. Her will and determination makes her life, a champion’s life. I believe that her book should get the best possible publicity and be widely read. There are so many life-lessons in it for us all.”
While treatments have helped increase life expectancy for those suffering with muscular dystrophy, no cure currently exists.
Fatema has been coping with the condition since childhood with the aid of her parents, Abid and Rashida, both naturalised Bahrainis and her siblings Sakina, 29, a baker living in India, and Mariam, 19, a psychology student studying at Portsmouth University in the UK.
Abid owns a textile shop called Suiting’s Corner and a ready-made garments store called Al Khaz Garments in Manama. Rashida is a part-time teacher. Their eldest son, Qusai, lost his life to the disease at the age of 13 and their daughter, Khadija, who was born prematurely passed away after six hours.
Sadly, Qusai passed away in 1997 on July 20 and it was a difficult loss. Fatema was around a year and 11 months at the time and was still able to play with her siblings and cousins.
While most families would be disheartened and discouraged, Abid and Rashida held their heads high and carried on to support their other children, in particular Fatema.
Fatema was diagnosed as having muscular dystrophy after undergoing tests in London at the age of 10 at the same time that her parents were told they were both genetic carriers of the disease.
They returned home and Fatema joined Al Noor School receiving ‘brilliant’ support from both teachers and fellow students. Her parents were constantly by her side, especially in her last two years of schooling, when they would both carry her in a wheelchair upstairs to her classroom.
Their love and support was boundless and they would spend hours with her day and night.
The school gave her a private hall to conduct her examinations after she fell ill and needed hospital treatment. She even arrived by ambulance on a stretcher for one test. According to her parents, she was loved by all and achieved impressive grades.
Fatema, who loved to dress up and was always impeccably coordinated, began jotting down her thoughts when she was a teenager in ninth grade, not knowing that one day it would be published.
Shaikh Nasser bin Hamad Al Khalifa, Representative to HM the King for Charity Work and Youth Affairs, Chairman of the Supreme Council for Youth and Sports, President of Bahrain Olympic Committee, attended her graduation ceremony.
The royal, famed for his sporting prowess, had photographs taken with her and even told her how she was ‘stronger than me’.
After her graduation in 2013, Fatema needed time to herself because her health deteriorated. Determined to carry on with her studies she enrolled at Arab Open University in 2014 to study business and completed almost three years of her course until she caught another severe flu and was admitted into the Bahrain Defence Force hospital in January 2017 for breathing problems.
She needed a tracheostomy to help her breathe and has had to live on fluids ever since.
“The tracheostomy which has hindered her ability to talk,” said Rashida. “With some practice every day, she has been able to sit back in her chair and remains both mentally sharp and observant. She loves to learn and that is all she really wants to do.
“She has a mobile to text her friends and, little by little, she has practiced using her fingers more and has started writing again using her phone.
“Truth be told, we didn’t know she was planning to write a book. She just used to enjoy writing. She always had a desire to achieve her dreams and when she couldn’t because of her physical weakness she used to write down her thoughts instead.”
Technical issues hampered her efforts when data was lost but she bounced back, used notes she had kept written earlier and stored her memories with the help of her sisters on a USB.
Her family urged her to turn the memories into book form and she received help and support from the Special Families Support Group run by Fadia Qureshi to edit and design the publication. Delighted with the finished product, the Mohsen family printed 500 copies at Arabian Printing Press.
Taking a page from her own book, Fatema returned to university in September and attends up to three classes a week.
She sleeps with the aid of a ventilator but during the daytime she is able to breathe without the machine for a few hours.
Fatema would like to thank the SFS team - Agnus, Vania, Arpita and Fadia - for their book editing and design skills as well as the SFS families that have supported her.
“A very big thank you to my parents who have been very supportive to me in my difficult journey of life, my sisters who always encouraged me and were beside my bed in spite of their busy lives and my grandfather and family members who flew in from overseas to be with me in my difficult time,” Fatema added, “and Juzer and all at Lulu.”
She is currently working on a second book. Get ready to make more room on your shelves.
Her book will also be on sale at the British Club Christmas Fayre on Saturday between 2pm and 6pm.
