By Ammara Farooq Malik
In 2018, I was presented with the idea to apply for the Fatima Jinnah Woman of the Year Award by the Government of Punjab for my advocacy efforts to bring bone marrow transplant facilities in Lahore. I was quite uncomfortable about applying for any such award because I still feel awkward about discussing my personal life or philanthropic activities online or in public. But I was persuaded to apply by my mentor, Dr. Sarfaraz Khwaja, ex Dean of the National School of Public Policy, to apply because the recognition would help give a boost to my cause.
I agreed reluctantly and started gathering my evidence for the application. It was then that I realized that I have a huge amount of supporting documents that I have up until then never really compiled.
The following are extracts from what I submitted to the Awards Committee as my supporting statement:
‘Field/ Specialization: Empowerment through Health Awareness & Advocacy
My first daughter was born critically ill at birth in 2003, requiring a blood transfusion at the age of 8 hours. In the days to follow, she would have all kinds of painful tests conducted on her and would become blood transfusion dependent because the doctors in Pakistan were not be able to handle her case properly. She had a rare enzyme deficiency which was a rare mutation only in her case, making her the first of her kind in the world. We would be told eventually after many years that what she had, would not be repeated ever again because it was a rare occurrence.
In the years to follow she had over 155 often risky blood transfusions and two experimental bone marrow transplants in Italy because there were no bone marrow transplant facilities in Lahore or Islamabad at the time and the one in Karachi, we were not aware of. She had to undergo the second transplant because of the medical negligence of nurses in Karachi. As Muslims, my family and I also had to face racism in Italy at the hands of other patients admitted in hospital with us. But we always maintained peace with them despite our own suffering because it was expected of us as Pakistanis to break rules. And we never did.
My daughter despite her suffering, undergoing fatal bone marrow transplants, chemotherapy and medical isolation continued her love for studying and helping others while she herself was in hospital as a mere 5 years old. This absolutely baffled me and taught me so much about humility, selflessness, bravery and hope. It was also my driving force to continue to do all that I could for others in the years to follow. Therefore in 2009, when we got back from Italy after the second transplant, I wanted to give back to the community that was always ready to donate blood and help my daughter. I restarted my community platform ‘SEPLAA’ with that intention to create a sadaqa jaria for my family and particularly children, youth and women. I vowed that with every penny I earned I would give some away as the corresponding sadaqa, something I later understood was a model called ‘social enterprise’. I have since been promoting this concept so that there can be a ripple effect of the work that I do.
In 2010, I also started advocating for a bone marrow transplant facility to start in Lahore for patients who cannot afford to travel abroad because I would never even dream for an enemy to go through the kind of collective pain my family went through in a foreign country where no one understood you. It was a very difficult journey . No one knew me. I was a young mother with big impossible dreams, a sick child and practically no support in taking on giants in the industry.
Some of the work I did for health advocacy to empower people suffering from blood disorders, about their options are listed below:
1. Brought the collaboration from San Matteo Hospital (Pavia, Italy) to Pakistan in 2010. (MoU copy available.)
2. Connected National Institute of Blood Disorders (NIDB) Karachi with Chughtai’s Lab Lahore and San Matteo Hospital Italy to start the first BMT facility in Lahore. Proposed that the facility should be started in National Hospital Lahore, story later covered in the press. Lahore & Italy, 2010-2011.
3. Researched about Blood Bank facilities in Lahore uncovering shocking discoveries about some top organizations in Lahore. 2012.
4. Coined the slogan and rigorously promoted the concept of ‘Save a life, save a generation’ about the benefits of compulsory blood screening to help avoid the occurrence of thalassemia in newborns. (Published several articles, appeared in the media for awareness.) 2010-2013
5. Worked with Dr. Tahir Shamsi of National Institute of Blood Disorders in Lahore for over a month to try to find suitable premises for a new Bone Marrow Transplant Facility in Lahore. 2013.
6. Guide patients of blood disorders about their options in bone marrow transplantation in Pakistan and abroad. (Email correspondence available) 2009- to date.
7. Advocate of medical ethics in Pakistan and have researched/ written/ spoken extensively on medical negligence in Pakistan. (Several articles published in press and appeared in media.) 2009 to date.
8. Participated as a Technical Expert for Policy formulation on Breast Feeding, Awareness Seminar held by Save the Children to talk on “The Protection of Breastfeeding and Young Child Nutrition Ordinance 2002”. 2014.
9. Created the ‘Thalassemia Awareness Ambassadorship Program’ and ran it for 3 years. 2011-2014.
10. In 2016, Dr. Tahir Shamsi started the first private BMT facility in Lahore in the National Hospital Defence, as per my initial proposal. 2016.
11. In 2017, the first public Bone Marrow Transplant facility started in the Children’s Hospital. Dr. Tahir Shamsi publically acknowledged my efforts to help bring bone marrow transplant facilities to Lahore. (Documentary evidence available). 2017.
It seemed such a colossal effort to work with the medical giants when I had to struggle with a sick child and other small children, along with little support for my unpaid efforts from my family, much of which they did not understand. But I kept sending emails and connecting people and patients with bone marrow transplant facilities wherever I could.
In 2013, I also turned my efforts to social enterprise development through ICx Seplaa because at the end of the day, I wanted to help others and by then I understood, in a sustained way. Since then, Seplaa has evolved into the SEPLAA Foundation and Seplaa Enterprises. I have worked with children, youth and women based on the initial drive to give back to the community with several projects completed and documented in women empowerment, peace, social enterprise development and community development.
I will continue writing articles regarding awareness of BMT since I keep getting messages from so many patients. There are over 25,000 patients in Punjab who have blood disorders and who might require free BMT facilities.
Starting the BMT facility is just the beginning.
The road to perfection in this process and cure, is long and requires constant hard work and strong checks for improvement/ maintenance of quality. ‘
I was eventually one of the three people shortlisted for the Fatima Jinnah Award in 2018. However, with the unstable political conditions in the country at that time, the final award was never announced and the ceremony never held.
The best thing that happened because of this experience though, was that after going over and seeing my own journey from a different lens after so many years, I have a renewed drive to do something for those suffering from the pain of going through a BMT, but this time, I am adding mental health issues and muscular dystrophy issues on the website too. There is so much still to do.
May Allah give me, my family and friends, the opportunity to do more for those who are suffering. Ameen.