Before I introduce the Heroine of our story, KEYA, my 12 year old brave daughter, let me give you all a little background. Keya was born just before Christmas in 2010. The family rejoiced her coming. Keya’s  was born normal, just like any other child.  

I had a complicated pregnancy, she was born with the 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 weight gain and 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 was, to babysit. This didn't go down well with him and his family over time. I turned into the bread winner for the family. 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 age. Keya could not walk from birth but managed to sit with her prosthetic braces. Against all odds, we decided to school her with help of a shadow maid. She did superbly well, she was always bright from the start.

 
Keya was a quick learner and a complete social animal. Her friends buzzed around her at school. She grew up developing several, unbelievable talents despite her (dis) abilities. My marriage gradually fell apart, owing to the challenges we faced in the family.  In 2014 Keya's father walked out on us, leaving us to our fate. The children were discarded 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 each of our lives over time.  I tried for as long as I could, but finally had to surrender my corporate career and job  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 she 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.

We hustled and raised some funds  through crowdfunding last year and with a lot of HOPE relocated to Mumbai for Keya's much needed spine surgery and her SMA treatment with Risdiplam which we managed to start 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 has successfully undergone her Spine Surgery to treat her condition of Kyphoscoliosis in May 2022.

She is 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.

TO SUMMARIZE

 
Keya is 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. Yes to us Keya is a ROCKSTAR!! With her shivering hands, 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 smiles and Almighty knows how much she deserves that one shot to this cure.

 
Today there is a cure for Keya’s SMA , and its with an USFDA approved drug named RISDIPLAM, launched by Roche Pharma in 2020. Also known as one of the most expensive drug in the world.  This treatment will give Keya a new lease of life and stop her SMA from spreading and eating into the remaining of her body and spirit.

 She has been prescribed 30 bottles per year, for lifetime. The cost per year is almost INR 80 lacs a year , which she needs to take her entire life.  With this she needs continuous rehab and surgeries as required from time to time.  

To raise this money every year is  beyond my capacity at the moment .  Hence I urge each of you to join hands with this Mom 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 we ask for. I believe with a little help, contribution and support from each of you, WE CAN MAKE IT HAPPEN.

With folded hands and immense gratitude for your act of compassion, well wishes and prayers.  
Keya's Mother
Monisha.