She was born just before Christmas in 2010. The family rejoiced her coming. Keya’s health was always a concern from her birth. Had a complicated pregnancy with her. She was born with the chord wound twice around her neck and with a very low birth weight. She remained weak and unwell for days after her birth, with very little weight gain and delayed motor skills.
We decided to get her checked thoroughly. Several doctors and even more tests later, she was finally diagnosed with 3 simple letters, SMA. I was unaware of what it meant till I was explained by her neurologist that, “Ma’am, your child has been diagnosed with Spinal Muscular Atrophy, a rare, terminal, neuromuscular genetic disorder. You would be lucky if she lives past her 2nd birthday, as there is no cure." Keya was turning ONE in a month . I went into a state of shock. All I could do was hold Keya in my arms tighter than before, so nobody and nothing could take her away.
Having developed severe post-partum depression, owing to the recent events, I had no other option, but to remain strong and keep moving ahead. Between me and my Husband, we had to trade-off, one of our jobs to look after Keya, basis whose income could solely support the family. Mine could and unfortunately his didn’t.
We were classmates in college and had worked equally hard to come this far in Life. He set aside his career, quietly, to take care of our daughters, especially since Keya had to be managed at home. Over time, I turned into the bread winner for the family. It killed me to leave my ailing child daily and go to work, knowing I could not even take care of her, but we had huge expenses and a future to secure for the children.
Years passed by. In 2014, Keya turned 4 years and her elder sister turned 8. By then we all had worked around how to live with Keya’s SMA. I had learned from her doctors and through some research that by working on Keya’s immunity and with physiotherapy, we could slow down the disease.
Keya could not walk from birth, but managed to sit with her prosthetic braces. So against all odds, we decided to school her with help of a shadow maid. She did superbly well, as she was always bright from the start. She was a quick learner and a complete social animal. Her friends buzzed around her at school.
Our marriage gradually fell apart, owing to the challenges we faced in the family. Its never an easy feat for a father to be a mom and vice versa. But we were both helpless. 2014 turned out to be the last year together. The children remained with me as my husband was in no financial position to support them.
I have been managing as a single parent since. Its been anything but easy. Keya has grown up well in spite of her SMA, which has only managed to deform her physically. Today she aces her academics, sings, dances, loves to paint and is an amateur You-Tuber. KEYA despite her challenges, is a ROCKSTAR!! With her shivering hands, immense pain in her body and endless courage, she holds us all together in our weakest moments, inspiring us to keep moving ahead and leading by example.
I started and ran 3 short-lived ventures, by taking time off from my full-time work as and when challenges arose. Our first one was an organic meal catering platform called MIND YOUR TONGUE, as we always loved to eat healthy. Our second being an education venture called CREATIVE BENT OF MIND which taught art and crafts to children, especially those with special needs.
The most recent one called FESTIVALS OF INDIA, which was launched during the pandemic to celebrate Indian Festivals online and promote Indian art, culture and education amongst the global Indians. None of these Ventures were initiated with the aim of making money, but with the aim of meeting like minds and spreading love and joy. I always knew Keya would miss out on the regular experiences of a child her age and hence wanted her to experience life more interestingly and meet people through these little ventures.
What’s our next move? It's time to fix Keya up . She has been holed up at home without proper medical attention, these past 2 years, owing to the pandemic. Her muscular weakness has grown and her spine has developed Kyphoscoliosis which requires an immediate surgical correction and rigorous physical rehab to help her sit so she can continue schooling and painting which she loves.
Fortunately, today there also exists an approved cure for Keya’s condition, SMA Type 2, a drug named RISDIPLAM, launched by Roche Pharma, which can give her a new lease of life. Unfortunately, the cost of her surgery and this drug together is way too high for me to bear.
I urge each of you to share our story with your friends and family. We believe with a little help, contribution and support from each of you, our Keya will be able to defeat this dreadful progressive illness. Lets come together to add a few more years to my courageous girl's life. Today Keya is bent but not broken and will pray and wait for your support to come soon.