Allow me to introduce the real hero of this story, KEYA, my 13 year old brave daughter.
Keya was born just before Christmas in 2010. The family rejoiced her coming. Keya’s was born normal, just like any other child. My eldest daughter who was 4 years old then, was the happiest. She always wanted a little sister to play with.
With Keya, I had a complicated pregnancy. She was born with the 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 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, progressive, 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.
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, so I was compelled to work and he, to babysit. This didn't go down well with him and his family. I turned into the bread winner for the family by force. It killed me to leave my ailing child daily and go to work. We had huge monthly expenses, medical bills, loans, two kids whose future needed to be secured.
Years passed by. In 2014, Keya turned 4 years old and her elder sister turned 8. By then we 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 with 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. Against all odds, I decided to school her with help of a shadow maid. Most schools I tried, denied admission till one didn’t. She started schooling and did superbly well as she was always bright from the start.
Keya was a quick learner and a complete social animal. Her friends buzzed around her at school. Though she was physically growing weak over time and needed a lot of support, she developed several, unbelievable talents despite her (dis)abilities. My marriage gradually fell apart, owing to the challenges we faced in the family I was married into. In 2014 Keya's father walked out on us, leaving us to our fate. The children were deserted along with me. Their father never looked back till date to check on us over these years, instead cursed us for ruining his life.
I have been managing as a single parent since. Working twice as hard to provide, with the physical support, my old and retired parents could offer for my kids, which dwindled over the years as they grew older. I knew our days were only going to get harder, so I saved a bit for the rainy days to come in future.
SMA didn't just affect Keya, its penetrated into each of our lives over time. I tried for as long as I could, but finally had to surrender my corporate job and life line which provided for me and my two daughters, in 2019, owing to Keya's ailing condition. Overtime , Keya developed not only severe Kyphoscoliosis in her spine, but today lives with a dislocated right hip, frozen hips and knee joints for which surgery has been advised , severe osteoporosis, kidney stones and obstructive sleep apnea.
13 years ago there wasn’t any cure for SMA, but today there is. With the love, blessings and support from our kind hearted donors and a few Corporates who have come forward to support our fundraising journey, we have been able to support Keya's SMA treatment since Jan 2022. She has also successfully undergone her spine correction surgery owing to which she can sit and breathe without support today. This treatment has given Keya a new lease of life. It arrests the progression of SMA, preventing it from spreading and eating into the remaining of her little body.
To raise this kind of money every year is beyond this Mother’s capacity at the moment Especially having no consistent source of livelihood. Hence I urge each of you to join hands and donate to save my little girl, who has suffered and struggled beyond words. We are targeting to raise funds annually with the hope that this treatment will get further subsidized or insured in future. Keya has been prescribed 30 bottles of Risdiplam per year, for lifetime. The cost per year of her life is INR 80 lacs. With this she needs, continuous rehab and surgeries to release her contractures in her unused body joints, from time to time.
No donation amount is too small or big for us. Our coming together matters as it will add a few more, suffering free, years to my courageous girl's life, which is all I ask for. I believe with a little help, contribution from each of you,
WE CAN MAKE IT HAPPEN.
HERE IS WHY KEYA IS THE TRUE ROCKSTAR OF THIS STORY
Keya is in now in class 7. Thanks to her ongoing life-saving treatment, Keya is today a nationally acclaimed Young Author, an Artist, a Coder, Motivational Speaker, YouTuber and a Podcaster. Keya is also known as a young SMA ambassador who is rigorously advocating for support and the rights for 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 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 is currently ranking #2 in the ongoing NYAF 2024 competition . (More Info Below)
To us Keya is a true ROCKSTAR!! With her little body physically withered by SMA, she displays endless courage and holds us all together in our weakest moments, inspiring us to keep moving ahead, leading by example. Keya is full of LIFE and HOPE . Always smiling and our Almighty knows how much she deserves that one shot to this cure.
Our only question where ever Keya and me have gotten a stage to speak, over the past 2 years is ..
" When treatments for Rare Diseases are so astronomically expensive and unsupported in India, Prevention has to be the Key !
Why then is our Government not doing enough to spread awareness on rare diseases? "
A simple gene-mapping test with your partner can help you check against possible rare diseases in your offspring.
Plan to take one before planning a family. "
Do continue to spread the word and support Keya.
With immense gratitude for your act of compassion and well wishes for your good health.
Keya's Mother- Monisha
Keya's First Book : Winner of :
*BriBooks National Best Seller - NYAF 2023
*BriBooks Best Entrepreneur Award - NYAF 2023
*Best Language Writer - GKAA 2023
*People's Choice Award - GKAA 2023
*Kids Achiever Award - UNIMO 2024
Keya's life-saving SMA treatment costs INR 80 lacs / year for life. Thanks to your valuable support, Keya is receiving treatment since Jan 2022.
13 year old Keya is a national award winning Author. She is also an artist, coder, motivational speaker, YouTuber, podcaster and singer despite her SMA condition. Keya's book links:
We are actively working to spread SMA awareness in India through our campaign :