Imagine if you woke up in the middle of the night. You wish to move but you can’t, no matter how much you try. Sounds scary right? Sadly this is the condition of 9-month-old Rehansh who has Spinal Muscular Atrophy Type 1. The day he was diagnosed, a price was stamped on the child’s life.
What is Spinal Muscular Atrophy Type 1 (SMA)?
It is a genetic disease affecting the entire nervous system, peripheral nervous system, and hence voluntary muscle movement. Maximum nerve cells that control muscles are located in the spinal cord, which accounts for the word spinal in the name of the disease.
SMA affects 1 in 10,000 babies and is the #1 genetic cause of infant death worldwide.
“My name is Rudrakshi Monga, I and my husband Manish Suri are seeking your help for our son Rehansh. On 2nd May 2020, Manish and I were blessed with our baby boy. It was during the peak time of COVID-19 while trying to protect our bundle of joy from that deadly virus we did not see something a lot worse sneak up on our happiness.
Everything was going well up till the fourth month. We couldn’t be happier for our new member but then things started going downhill. Suddenly he was unable to lift his legs. After consulting a doctor we were informed that it would improve with time. However, it wasn’t until he turned six months that we started to suspect something larger at play as he wasn’t able to even hold his own weight and sit up on his own. When consulted, we were informed to put him under Occupational Therapy but to no avail. Desperate to find an answer we underwent Genetic Counselling. The reports of those crumbled our world. He was suffering from SMA Type 1. We were also told that the only hope for Rehansh to have a normal life is to be able to import Zolgensma, a one-time gene replacement therapy, which in his current state could be a potential cure. This medicine also happens to be the most expensive drug in the world - 16 Crores”
Our Motive is to give him a Fulfilling and Long Lifespan, but the cost of which is something we cannot bear. So does that mean we will lose our child?
WHAT YOU CAN DO TO HELP
- Donate money: Please donate whatever you can spare. Every donation will count towards saving Rehansh and giving him a chance at living a good and fulfilling life. Alone the parents cannot bear to save little Rehash but together it is not impossible. The times are hard for everyone. Even sharing this story on social media will play an important role.
- Contribute your time. We are in for the long haul in our fight against this deadly disease. The best course of action is to raise awareness and get the necessary infrastructure set up in India. Only time and continuous lobbying will contribute to long-lasting change.
- Spread the word. Healthy parents could have a genetically affected baby. Genetic testing is in a nascent state in India, with limited labs and clinics available for diagnosis. Tell others about genetic testing, so this becomes a common practice as it is in most western countries like the USA and Canada, where genetic screening is part of post-natal care.
One of the best feelings in the world is Saving a Life. Your donation will not only help our son live his life but will help us preserve our Family
