A birthday message, bone marrow transplant and hope.

By Ammara Farooq Malik

The following post was written by me on 18th September, 2017 on facebook. I am reproducing it below for the record to help future advocacy efforts for blood disorders and bone marrow transplant facilitation and improvement in Pakistan.

18th September, 2017, Lahore.

Important happy post: Please read till the end 

14 years ago today, my world changed forever. I gave birth to a beautiful baby girl who was born under an emergency c section only because I argued with the duty doctor to check me when she was infact dismissing me as being paranoid. Maybe it was my argumentative streak that saved her life that first time because any couple of hours after and it would have been too late.

My first daughter was born critically ill at birth, 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. It just had to happen to her, and to us as her parents.

In the years to follow she had over 155 blood transfusions and an experimental bone marrow transplant 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. No one had treated PK deficiency with BMT before in the world so we had to go to the best to experiment. It was a very difficult decision to make because it was either that or watching her slowly die.

One bright doctor had cold heartedly told us that she would not live to be twenty. At that time she was 2. At another time, the doctors erroneously told us that she had CMV and that she would lose the faculty of hearing, speech, movement and become completely disabled. At that time she was 5 days old. A close relative told me to pray that my daughter should die but I cried and I fought. And I screamed back while still admitted in hospital with my stitches that I accepted my fate and would fight for my daughter, and for her life. Because she was so obviously fighting to stay alive. How could I make a mockery of her bravery by even thinking of giving up? And then that nagging faith of mine, which baffled me every time, making me wonder ‘why is Allah saving her again and again? There had to be a reason, I always thought.

And then when she recovered from her transplant, we tried desperately to have a normal life. But we were not normal. We were never meant to be. And then out of ‘2000 cases, hers was the only second case’ to require a SECOND bone marrow transplant in such bizarre circumstances only because of the negligence of the top hospital in Pakistan.

My daughter then had to undergo another bone marrow transplant and chemotherapy and medical isolation for another year. Throughout this time, her love for studying, helping others while she herself was in hospital when she was only 5 years old, absolutely baffled me and taught me so much about humility, selflessness, bravery and hope.

People used to say they looked up to Mandela and Gandhi for inspiration. In my talks I used to say, I got that inspiration from my 4 year old daughter.

The important part after all of this was that when we got back from Italy in 2009, the second time, I wanted to give back to the community that was always ready to donate blood and help my daughter. I restarted Seplaa with that intention to create a sadaqa jaria for my family and particularly children. 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’.

And 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 and practically no support in taking on giants in the industry.

I met with so many doctors, brought a collaboration from the Italian hospital to start the facility in Lahore. I didn’t ask for anyone’s money because I come from a proud family that will be more than happy to help others but will not accept help themselves. I did all of this quietly without announcements on social media because this required years of struggle.Many things were covered in the newspapers though. At one point, my idea of bringing Chughtai’s Lab, NIBD Karachi and the Hospital San Matteo together got leaked to the press. I was so upset because I didn’t want information to go out until, things had been successful. I immediately removed all information of Seplaa’s having done so much work in advocating for a bone marrow transplant facility in Punjab, medical negligence, ‘Save a Life, Save a Generation Blood Disorders Campaign’ in the health sector, going to medical colleges and Punjab Health Department meetings etc from our websites. (Some material was later restored on the website).

This was because the work was real.

It wasn’t for show or cheap publicity and I was myself confused with what Allah wanted from me. It seemed such a colossal effort to fight the bureaucracy and 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. I have dozens of patients who wrote to me asking for guidance who I helped and countless emails supporting this in my inbox.

In the years to follow, there were off and on efforts with Dr. Tahir Shamsi to start the facility in Lahore. The last was in 2013, when I spent a whole month trying to find a space for the first bone marrow transplant facility in Lahore near the Shaukat Khanum Cancer Hospital. After a month of looking and finalizing, Dr. Tahir Shamsi who was in touch with me from Karachi, just disappeared. I still don’t know why he did that. He probably had his reasons but I would have not been agonized to think that I was a complete failure in helping others, if he had just reached out to me.

I then 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, so that it could continue with or without me. Since then, Seplaa and its various projects have helped over 30,000 people in other projects based on this initial thinking. I thought very sadly that this noble position of being able to save real lives by bringing the BMT facility for patients was not meant to be my destiny. I was not fortunate enough to be that ‘person who could save lives’ though I so desperately wanted Allah to count me as one of them.

And then just a few weeks back, in 2017, I heard back from Dr. Tahir Shamsi.

In response to a tweet I put up about my helping a small poor boy smile by allowing him to swing on the swings in my house, he wrote ‘ Assalam-o-alaikum Ammara. Your dream of BMT come true. All thalassemia kids are getting it for free from this year.’….’Long struggle. You played important role. No child will be deprived of BMT in Lahore. Bahawalpur next.’

Lahore’s Children’s Hospital now has a Bone Marrow Transplant Unit to cater to the over 25,000 blood disorder patients in Punjab and the government has allocated special funds for free BMT procedures of poor affording patients!

To say that I am ‘happy’ is an understatement. This is such a big achievement for all of Pakistan!!

I couldn’t sleep for two nights after I got this acknowledgement. It is probably the biggest award of my life! There have been many doctors who have had to work to bring this facility to Punjab and the Punjab Government too. But then there have been ordinary people like my family too, who kept pushing forward because they had a story to tell because of a struggle they lived through.
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Thank you Dr. Tahir Shamsi for acknowledging my humble efforts to bring bone marrow transplant facilities to Lahore and your efforts in bringing the facilities to the whole of Pakistan are commendable!

There is a long story behind this struggle which finally has a happy ending that many thousands can now relate to. It is not my story anymore nor my daughter’s but has encompassed so many others.

My daughter’s name is Amal, which means ‘hope’. And it is her 14th birthday today. 

My dearest Amal: Your struggle, your pain, your bravery and your humility helped me keep charging forward despite the one million odds. I used to wonder if this tremendous struggle was your test or mine.

Maybe it belonged to both of us.

The good thing is that you don’t remember the pain. But it is etched in my memory forever. It is the driving force of my faith and has defined who I am. There are a thousand lessons of bravery, resilience, hard work, leadership and above all, faith, in all that we went through.

Two years ago, after you had a long list of your own personal accomplishments of helping underprivileged school children and special children, you cried and asked me ‘Amma, what if I am not able to fulfill the purpose of my existence?’

It was a big thought for a 12 year old.

And I answered you ‘ I don’t know. What if I am not able to fulfill it either? Maybe we are supposed to do big things in life, or maybe my being a good mother is all that is expected of me and even that is a constant struggle. We all have to keep struggling to be good.’

The start of a bone marrow transplant facility has given me a closure to a chapter in my life that lasted 14 years. I might write about it in ‘Life, blood and compassion’- The book. ,or I might write it just for my family. If I write, it will be complete with all the failures of society, the racism my family faced abroad, the struggles of my family and the struggle of a Pakistani mother trying to create something for others because she believed in it. It will also be about the people who pulled me down and those who pushed me forward….many famous people and important events in Pakistan’s history feature here. In many ways, it will be a story of peace, love and hope. It will be about God’s Plan B for all of us, which is always meant to be Plan A, but we don’t know it until we see it after many many years when things come full circle. We are blessed if we see the cirlce complete in our lifetimes.

For now, Amal, you should know that your existence has already helped achieve tremendous feats! And now you should go back to being young and free  Your struggle and pain did not go in vain. Allah has been very kind. We are forever in His servitude. It is time for you to live your life 

Happy happy birthday to my dearest daughter Amal. 

Today you are all I could have never imagined you would live long enough to become: intelligent, kind, conscientious, responsible and one of my best friends. (The other best friends are your sisters and khala  )

All those who have taken the trouble to read till the end, please say a prayer for Amal’s well being and that of my family.

JazakAllah.

It is now time to move on 

 

Join ICx Seplaa programs. Visit facebook @ICx.Seplaa

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