Tahira Tahir from Pune is the Regional Coordinator of Cure SMA Foundation of India and a passionate parent advocate for access to the treatment options for Spinal Muscular Atrophy Type 1, despite losing her son to this rare disease.
It’s been less than a year since I heard my life’s most shattering news, although it feels like I’ve travelled ages since then. In October 2018 my angel, the most beloved part of mine, my son Sameer Ahmad was diagnosed with a fatal, debilitating, rare neuromuscular disorder, Spinal Muscular Atrophy (SMA Type 1). Lost and terrified, I refused to accept this harsh truth for days when the only thing I could do was helplessly cry over it. However, there was a sudden flash of strength inside me in the days that followed, for which I would thank two factors, one is the Almighty and the other is my son himself. These two factors have been my constant source of strength and positivity ever since then.
Connected Through Pain
In November 2018, we got connected to hundreds of parents like us through the organisation Cure SMA Foundation of India and realised that there was a lot of pain in this world than we ever knew. In very little time the organisation became a part of us. With each passing day, we were losing innocent lives and every life lost was equally devastating to each one of us. The primary focus of Cure SMA India was to get affordable access to the enormously priced treatments of SMA (Spinraza and Gene therapy- Zolgensma) in India and every member in its core team was resolute in this fight. This, along with being the caregivers to sometimes even more than one child with the condition. The struggle was much more than words can perhaps elaborate. The emotional bond was no longer limited to just our child. As we were spending sleepless nights to figure out every possible way to save our child, time was slowly taking away Sameer’s abilities until one fine day, when it took away his ability to breathe. Our angel left us in January 2019, few days after his first birthday.
At that point of my life, pain had taken a completely different form inside me. It had transformed into empathy, courage, positivity, strength and most importantly the desire to not let this happen to anyone else. The battle wasn’t over for me, not until I could save others from the emotional turmoil we went through. And that begun my journey to fulfil this desire.
Purpose of my son's life
People often think that the loss of a life is the end of the struggle. Whereas, I would say that it’s just the beginning of the struggle. What if they couldn’t live enough to justify their existence? What if they couldn’t speak for themselves? Their lives should not be limited to merely the physical existence. They are much more precious than to get faded away in physical memories. Their souls deserve to be imprinted on the lives of their loved ones and to be reflected in their deeds.
I strongly believe that the purpose of my son’s life was to make me see the pain which I otherwise was ignorant towards. It was to teach me empathy which was otherwise non dominant in me. It was for me to be the voice for the silent lives that were lost. It was for me to work towards ensuring that those lives get the justice they deserve. And hence, the strength was multiplied manifold and the fight was stronger than ever before.
Sameer had come into being as a part of me, and he has again become a part of the much better version of me, and that part of me would always be a ray of light to those lost in darkness, a shoulder to those crying, a voice loud enough for those who’re fighting against the injustice in this world, a helping hand to those in need, a listening ear to those depressed. And this is how I choose to live my life now. This part of me that represents my angel would always shine brighter than anything else.
AS MUCH AS SHE DIED EACH DAY, SHE WANTED HIM TO LIVE.
NOT IN EVERY WOUND OF HERS,
BUT IN EVERY DEED OF HERS;
NOT IN EVERY TEAR OF HERS,
BUT IN EVERY SMILE OF HERS.
Tahira Tahir, Regional Coordinator for the West and Central India Region for Cure SMA Foundation of India. Her father is an SMA type 4 patient. She worked as a Software Engineer for 6 years and quit to be a caregiver to her son. After he passed away she pursued her love for teaching and children and is an occasional blogger.
