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Allow me to introduce the real hero of this story, KEYA, my 12-year-old brave daughter. Keya was born just before Christmas in 2010. The family rejoiced in her coming. Keya’s was born normal, just like any other child. My elder daughter was the happiest. She was 4 then and all she wanted was a little sister to play with.
With Keya, I had a complicated pregnancy. She was born with a chord wound twice around her neck and had 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, a basis whose income could solely support the family. Mine could and unfortunately, his didn’t, so I was compelled to work and he had to babysit. This didn't go down well with him and his family over time. I turned into the breadwinner for the family by force. It killed me to leave my ailing child daily and go to work, but we had huge monthly expenses with two kids, loans, and a future to secure for the children.
Years passed by. In 2014, Keya turned 4 years old and her elder sister turned 8. By then we all had worked around how to live with Keya’s SMA which had slowly started eating into her. 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, 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 to even check on us over these years.
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. I hustled to raise some funds through crowdfunding last year and with a lot of HOPE started Keya’s SMA treatment with Risdiplam ( the only available cure for SMA type 2 , an USFDA drug launched by ROCHE Pharma ) in Jan 2022 . By the grace of God, prayers of all our well wishers and a team of very skillful doctors, at We Are Spine, Keya underwent her spine correction surgery successfully for Kyphoscoliosis in May 2022.
Keya is currently recovering post -surgery with rehab and has regained her ability to sit, breathe, study, sing, paint and draw with a smile. Wish I could express how precious that is for this Mom, whose soul has become numb with pain over time, seeing her child suffer and gradually get eaten away by this devil, SMA.
HERE IS WHY KEYA IS THE TRUE ROCKSTAR OF THIS STORY
Keya is in now in class 6. Despite her given condition, She codes like a queen, aces her academics, sings, dances, loves to paint and is an amateur You-Tuber. Not just this, she has recently published her first book on BriBooks.com called DANCING ON MY WHEELS, which has won her the national best selling author award at the BriBooks National Young Authors Fair 2023 amongst 1,00,000 entries received this year.
To us Keya is a true ROCKSTAR!! With her body physically withering away, she displays endless courage and holds us all together in our weakest moments, inspiring us to keep moving ahead and 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.
11 years ago there wasn’t, but today there is a cure for Keya’s SMA. Its with an USFDA approved drug named RISDIPLAM, launched by Roche Pharma in 2020. Also known as one of the most expensive drugs in the world. This treatment will give Keya a new lease of life. It will stop her SMA from spreading and eating into the remaining of her little body. She has been prescribed 30 bottles per year, for lifetime. The cost per year is INR 80 lacs. With this she needs, continuous rehab and surgeries from time to time.
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 for 1 to 2 years at a time. No amount is too small or big for us. Our coming together 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 and support from each of you,
WE CAN MAKE IT HAPPEN.
With gratitude for your act of compassion, well wishes, and prayers.
Monisha Hatkar. ( Keya's Mom )
Our information & support links:
Patient – Name & Age: Keya Hatkar, 12 years old.
Patient’s Mother – Name & Number : Monisha Hatkar , +91-9108052332
Patient’s Medical condition: Spinal Muscular Dystrophy – SMA Type2
Keya’s National Award Winning Book: https://www.bribooks.com/bookstore/dancing-on-my-wheels
With Keya, I had a complicated pregnancy. She was born with a chord wound twice around her neck and had 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, a basis whose income could solely support the family. Mine could and unfortunately, his didn’t, so I was compelled to work and he had to babysit. This didn't go down well with him and his family over time. I turned into the breadwinner for the family by force. It killed me to leave my ailing child daily and go to work, but we had huge monthly expenses with two kids, loans, and a future to secure for the children.
Years passed by. In 2014, Keya turned 4 years old and her elder sister turned 8. By then we all had worked around how to live with Keya’s SMA which had slowly started eating into her. 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, 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 to even check on us over these years.
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. I hustled to raise some funds through crowdfunding last year and with a lot of HOPE started Keya’s SMA treatment with Risdiplam ( the only available cure for SMA type 2 , an USFDA drug launched by ROCHE Pharma ) in Jan 2022 . By the grace of God, prayers of all our well wishers and a team of very skillful doctors, at We Are Spine, Keya underwent her spine correction surgery successfully for Kyphoscoliosis in May 2022.
Keya is currently recovering post -surgery with rehab and has regained her ability to sit, breathe, study, sing, paint and draw with a smile. Wish I could express how precious that is for this Mom, whose soul has become numb with pain over time, seeing her child suffer and gradually get eaten away by this devil, SMA.
HERE IS WHY KEYA IS THE TRUE ROCKSTAR OF THIS STORY
Keya is in now in class 6. Despite her given condition, She codes like a queen, aces her academics, sings, dances, loves to paint and is an amateur You-Tuber. Not just this, she has recently published her first book on BriBooks.com called DANCING ON MY WHEELS, which has won her the national best selling author award at the BriBooks National Young Authors Fair 2023 amongst 1,00,000 entries received this year.
To us Keya is a true ROCKSTAR!! With her body physically withering away, she displays endless courage and holds us all together in our weakest moments, inspiring us to keep moving ahead and 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.
11 years ago there wasn’t, but today there is a cure for Keya’s SMA. Its with an USFDA approved drug named RISDIPLAM, launched by Roche Pharma in 2020. Also known as one of the most expensive drugs in the world. This treatment will give Keya a new lease of life. It will stop her SMA from spreading and eating into the remaining of her little body. She has been prescribed 30 bottles per year, for lifetime. The cost per year is INR 80 lacs. With this she needs, continuous rehab and surgeries from time to time.
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 for 1 to 2 years at a time. No amount is too small or big for us. Our coming together 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 and support from each of you,
WE CAN MAKE IT HAPPEN.
With gratitude for your act of compassion, well wishes, and prayers.
Monisha Hatkar. ( Keya's Mom )
Our information & support links:
Patient – Name & Age: Keya Hatkar, 12 years old.
Patient’s Mother – Name & Number : Monisha Hatkar , +91-9108052332
Patient’s Medical condition: Spinal Muscular Dystrophy – SMA Type2
Keya’s National Award Winning Book: https://www.bribooks.com/bookstore/dancing-on-my-wheels
