This year, February 29 is being observed as the ‘International Rare Disease Day to raise awareness and generate change for people worldwide living with a rare disease and surviving the storm. To mark this day, Eureka brings to you the story of a young girl named Keya, a warrior fighting a rare genetic disease called Spinal Muscular Atrophy (SMA).
Keya was born with a chord wound twice around her neck and a very low birth weight. By the time she was nearing a year old, she began getting weaker, with little to no weight gain and severely delayed motor skills. Several doctors and even more tests later, she was finally diagnosed with SMA at the tender age of 10 months. SMA is a rare genetic disease that affects the motor neurons responsible for muscle movement. This disease progressively takes away the ability to walk, swallow, and even breathe and is the world's #39 leading cause of infant mortality. Her life was written off. But Keya and her Mom never gave up.
Years passed by. In 2014, Keya turned 4 years old and her elder sister turned 8. By then, Keya’s mother and sister had worked around how to live with Keya’s SMA, which had slowly started eating into her little body. Keya struggled with weight gain, breathing issues, and speech. Keya had a few episodes of critical hospitalizations owing to pneumonia till the age of 5 years.
“I learned from her doctors and through some research that by working on Keya’s nutrition, immunity, and physiotherapy, we could slow down the disease to a point and stretch her lifeline. Keya could not walk from birth but managed to sit with her prosthetic braces.”
- Keya's Mother
The only access to Keya’s lifesaving SMA Treatment is through fundraising. The cost of Keya’s treatment is INR 80 lacs per year for the rest of her life. Genetic diseases are not covered under any health insurance. Government or pharma support is as good as none.
Many children like Keya are dying owing to a lack of access to these cures. Overall, there is no awareness being created to educate people on how to diagnose or even prevent these rare diseases. Keya’s Mom has been relentlessly fundraising for her treatment for the past 3 years to keep Keya going so far. Keya is originally from Visakhapatnam and lives today with her mother and elder sister in Mumbai for her treatment. Keya’s father abandoned the family when she was only 4 years old.
“I cannot even begin to express Mom’s struggles. I have always seen her smile through these years taking care of me and Didi without differentiating between us”
- 13-year-old Keya.
Last year Keya and her mother started a personal initiative called I M POSSIBLE and SMA-ART to spread awareness and raise funds for SMA, through CSR and NON-CSR channels. They have also been trying to create sustainable livelihood opportunities for those suffering from rare diseases like SMA.
The best part is Keya is a very smart and intelligent girl and her achievements stand as a testimony. Today, Keya is a nationally acclaimed Young Author, an Artist, a Coder, a Motivational Speaker, a YouTuber, and a Podcaster. Keya is also known as a young SMA ambassador who is rigorously advocating for support and the rights of other SMA families in India.
She has published two books already in the past year, post her spine surgery. Her first book, called DANCING ON MY WHEELS, which has won her the national Best Selling Author ranking #2 and Best Entrepreneur award at the BriBooks National Young Authors Fair (NYAF) 2023 amongst 1,00,000 entries. Her second book is called I M Possible! which recently won at the NYAF 2024 ranking #1 amongst 2 lac entries this year. She is only aiming higher from here.
Indeed, Keya is a Rockstar!