Our Story

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Late 2012. I remember these few months so clearly that it feels like they happened just yesterday. My husband, Taha, loved travelling and had planned a vacation for us to Turkey on 22nd October. However, a week before our scheduled departure, he started having severe headaches, and two days prior to our travel date he was admitted into hospital for further diagnosis. The neurologist diagnosed migraines, but Taha’s sixth sense told him that this was something else and insisted on getting an MRI. On October 25th, Taha had a 3rd ventriculostomy with a biopsy that determined he had brain cancer. He then went on to have an 8-hour craniotomy to de-bulk the tumour on December 19th and the biopsy from this surgery confirmed that not only did Taha have brain cancer, but he also had the most aggressive kind there was; Taha was diagnosed with a GBM.

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As a young couple only 3 years into our marriage, it came as a sudden jolt to us that someone as young and healthy as Taha could be diagnosed with a brain cancer. Words cannot do justice to Taha’s larger than life personality; he was smart, he was confident, he was humble, he was extremely social, and more than anything he was a lot of fun. So, seeing someone like him being diagnosed with a terminal illness that takes over one’s mind and body was simply devastating. It was like torture for myself and our families, and I cannot even begin to imagine how it made him feel. Despite this, the strength that he exuded was enough to keep us all positive.

 

Needless to say, after this diagnosis, our lives came to a standstill. The next few months were a whirlwind of events for the both of us. Taha tried to cope with the changes in his mental and physical abilities and I tried to balance my full-time job alongside my caregiver role at home, and in doing so I realised that my priorities in life quickly started to shift. My husband’s journey as someone battling a terminal illness coupled with my journey as his spouse and caregiver, put us centre-stage into a life and world that we had never been privy to. After diagnosis, we frantically tried to educate ourselves about the disease and search for the best treatment available. Our aim was to remain positive and hopeful and we managed to have some very special moments of joy with family and friends, but I’d be lying if I said that there were no low points. We experienced first-hand the immense care and the extreme challenges of navigating through the healthcare system both in Pakistan and abroad. Two years after diagnosis, in late 2014, as the disease started progressing, I took a sabbatical from work and focused all my time and effort into my husband’s care. This was, by far, the best decision I have ever made as it allowed me to dedicate myself completely to my husband who needed me most at that time.

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Our journey through his illness was overwhelming and erratic as is the case for most people battling a GBM, but in hindsight I realise that our journey was also extremely isolated. We were very fortunate to have an extremely strong network of family and friends (and friends like family :) who were always there for us and thanks to them we had many high points despite the grave nature of the illness. However, we knew absolutely no one who was going through something similar to this. My husband’s medical team at the Aga Khan University Hospital in Karachi Pakistan were beyond fantastic and they went out of their way to support us as much as they could, but again, outside of medical and personal support, we had no form of non-medical support from a brain tumour community per se.

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Unfortunately, 3 years after diagnosis, in November 2015, Taha passed away and I lost my dear husband to brain cancer.

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As a young widow re-fitting the scattered pieces of the jigsaw puzzle that my life had become, I came to terms with where life had brought me and tried to re-align my internal compass to do what matters most to me. I relocated to Canada to be with my immediate family and started volunteering countless hours at the Brain Tumour Foundation of Canada to support those still battling the disease, with the hope of giving back in some small way. Volunteering there opened my eyes to the wide array of support elements that exist for brain tumour patients and caregivers and allowed me to see first-hand how they can improve the experience of those impacted by the disease. I then started to wonder how it would have been for Taha and myself had these support elements been available for us during our journey.

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This thought eventually brought me to the idea of establishing such a support organisation in Pakistan which services all those impacted by a brain tumour in the country today.

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The Brain Tumour Foundation of Pakistan was set-up in memory of my late husband, Mohammed Taha Rafi.

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Our Mission is to reach every individual in Pakistan impacted by a brain tumour with support, education, information, and research and to accurately represent Pakistan on the global brain tumour map.

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Our Vision is to drastically improve the quality of life for those impacted by a brain tumour in Pakistan and to help in eventually finding a global cure for the disease.

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Moreover, it is my personal goal to improve the journey of those still impacted by the disease in Pakistan, with the aim of making their journey easier than it was for Taha and me.

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Our foundation focuses on the following three aspects:

1. Raising awareness for the disease and providing access to information for the newly-diagnosed patients and their loved ones. This is a key activity that we are focusing on from the get-go. We understand how overwhelming it can be once a brain tumour diagnosis is given; it is difficult to find information readily about specific brain tumour types and of brain tumours in Pakistan. We strive to support impacted families in this area by having accurate information available online as well as providing the country’s leading cancer hospitals with information booklets which they can share with their brain tumour patients. This information we share will be catered specifically to Pakistan and to the journey of patients and caregivers who live in Pakistan.

 

2. Our next key focus is on providing non-medical support to patients and their families, by either providing support services and activities by ourselves or by connecting patients to other organisations that could be helpful. A few examples of such activities include support groups in different cities, as well as virtual groups online, and psychotherapist sessions through a qualified and registered third party.

 

3. Finally, we focus on raising funds for patient treatments and also for building a national cancer registry for Pakistan, which currently does not exist. Currently, brain tumour cases accounted for in Pakistan are very under-representative of the true situation in the country. I am confident that the better we can represent Pakistan on the global brain tumour map, the more we will be able to request for support and the more accurate the research that will be done for brain tumours in our region.

 

Thank you for reading about Taha and my personal story and mission. Please keep Taha in your prayers. 

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- Komal Syed (founder)

 

If you would like to find out more information about the Brain Tumour Foundation of Pakistan please reach out to our team