Last weekend at the M & S Eden Event Center on the Haatso-Atomic road, we launched a book that represents a triumvirate of emotions. It is a book written by an industrious young lady who has fought and is still fighting for life tooth, nail and claw.
The book is titled Will My Story Inspire you? Striving to Success with Sickle Cell. The book launch attracted a section of the public including medical doctors, university lecturers, politicians and mostly the youth who gave the author a gale of moral support and shot in arm.
The Special Guest of Honor was the wife of the vice president, Samira Bawumia
She was ably represented by Dr. Kofi Issah, the Director of the Family Health Division of the Ghana Health Service; the division in charge of reproductive health, health of women, children, and adolescents, the elderly and nutrition in Ghana. The programme which started in the morning and ran through the afternoon was chaired by the Personal Assistant to the National Chief Imam of Ghana, Mohammed Marzuk Azindow .The book, a 196-pager that contains the story of Adiza Bala Faila is filled stories of sadness, pages that will make you sorrowful and bring out all the empathy in you. It is also a story that fills you with strength; strength to face all the turbulences and pestilences of life and finally it is a story that gives us hope that the country will begin talking and possibly take drastic measures to reduce Sickle Cell Anemia in the future.
“Before I was born, my parents had already given birth to three sickle cell anemic children. Because of that they were eager to know my genotype right after my birth. Lo and behold! they found out that I was also a sickle cell anemic child. However sad they were, they were determined to help ease the pain of living with sickle cell as they had gathered enough experience from the lives of my late sickle cell anemic siblings.”
That is the story. Adiza Bala Faila was born after three siblings who all died from Sickle Cell Anemia. From the very day she breathed her first, she has been battling life, shuffling from between life and death, between the hospital and home, developing one complication to another, fighting for survival, fighting discrimination from ignorant and mischievous people all alike. At a point in time she had to break from school because she was sick all the time, travelled to Italy for cure, returned with a great reduction in complications yet sickness remained, uncured. Teachers put her down, friends treated her with disdain because she had got an ear affected and was always sick, family did not expect her to cross beyond the age 18 because her late siblings lost their lives somewhere 19,15, 5 years respectively and medical doctors had already given up on her setting her death date and all.
In all of this, Adiza never gave up. She turned thirty last Saturday, happily married to a man she describes as “adorable and hardworking”, graduated from the University of Ghana and pursuing a Masters in Public Relations at the Ghana Institute of Journalism and also she is the CEO of Shamfiz J Foundation.
Though felt sick most times, Adiza happens to be a vivacious young lady, always seen in high spirits and excitement. At the University of Ghana, she has been able to establish a relationship with friends who help her catch up with lessons which she could not grasp due to the hearing impairment caused by the Sickle Cell. She is also heavy in voluntary organizations and shows a deal of altruism by undertaking great philanthropic activities. She is a Member of Hope for the Street Foundation and the Vice President of Awaken Foundation; both of which undertake humanitarian activities in the country. Back in Senior High School, she was the Assistant Entertainment Coordinator of the Entertainment Committee and went on to become the Vice President of the Ghana Muslim Students Association back in the university.
This is what she says in the book “Hajia Adiza believes strongly that helping others even if that means they will become better than you is something all people should find easy to do. She loves to see people happy for the right reasons and due to the challenges she passes through as she sails through her path to success, she likes to teach people to never give up in life, no matter the situation they find themselves in. “
The book is not all that melancholic. The book gives us hope. The book shows us a girl who everyone believed will die in the cradle living up to three decades and more and pushing through the existing frontiers of education and achievement.
There is also the story of Lenabell Bell. She was diagnosed with Sickle Cell at age 6 with deep pains in arms, chest, back and leg which was always recurring. She was marked for death and told that she will never cross age 40. She went on to defy all odds survived till age 83.
Interestingly, the doctor who first diagnosed her has been dead for more twenty years already and the one made it known that she will die before age 50 is already retired for years and wears a hearing aid in each ear. Not Lenabell. These stories fill us with the profound understanding that we are all living miracles and testimony to the fact that no one holds the future save the almighty and if He’s not done with you, no medical prediction can take you to your grave.
Another hopeful fact the book gives us is the discussion on Sickle Cell Anemia in this country and the drive the country must take to reduce it drastically if not eradicate it completely.
According to WHO, 50-90 percent of children with Sickle Cell Disease will die before the age of 5 if they don’t receive treatment. Early diagnosis is therefore essential for instituting appropriate care and preventive therapy. The majority of babies born with the disease start to experience the first symptoms — such as the swelling of their hands and feet — when they’re about 5 to 6 months old. According to a 2018 study, SCD is most prevalent in low-income countries where newborn screening is rare and diagnosis at the point-of-care is challenging. Ghana is one of the few countries in sub-Saharan Africa that has a newborn screening program, but according to the President of the Sickle Cell Foundation of Ghana and Program Coordinator for the National Newborn Screening Program for Sickle Cell Disease Professor Kwaku Ohene-Frempong, there’s not a single country that tests all their children for SCD. In Ghana, “screening is currently established at 40 sites, but reaches only about 4 percent of babies.”
That is why the launch of this book is very important. At least it will revive the conversation on SCD in the country. And also it will make people aware. Part of the reasons Adiza we are discussing Adiza today is because of the wealth of knowledge her parents gathered about the disease after the demise of their three children. So they garnered all requisite and necessary effort, care and support for Adiza.
The book should be in every household. Every young person should know his or status. Couples should know their status before they enter into marriage. We need knowledge to enlighten ourselves on this disease. An enlightened citizenry is an empowered citizenry.
NB: The Writer is a Youth-Activist and the Executive Secretary of Success Book Club.