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Yuvansh May Not Live To Turn 2, Only One Life Saving Drug Can Save Him From SMA

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“Until he was about 3 months old, everything about Yuvansh felt perfect. He would kick his tiny legs when we smiled, try to roll to his side, respond to sounds, and make soft little cooing noises. Then slowly, he couldn’t even do those, let alone achieving any further milestones. At first, the doctor said he might be a little late with milestones. We held on to that hope. We never imagined it would be a disease that could take our baby away before his second birthday.”- Rajesh, father

This disease can kill him before he even turns 2

Yuvansh has been diagnosed with Spinal Muscular Atrophy Type 1, a rare and fatal genetic disorder that destroys the nerves and muscles needed to move, swallow, and even breathe. As he grows older, he is losing more and more strength. He cannot eat solid food, only semi solids. He struggles to hold his head up, cannot sit, and gets tired easily even while feeding. Every passing month makes him weaker.

For babies with SMA Type 1, the first two years are the most dangerous. Many do not survive beyond that without treatment.

Only the world's costliest drug can save him

“It breaks me to even say this, but we are watching our son lose the little strength he has left. We cannot even comfort him when his body feels tired. We fear every cold, every cough. We keep thinking what if his breathing suddenly fails. No parent should live like this. I am so scared of losing him.”- Kiran, mother

There is only one known cure for SMA Type 1. A one-time gene therapy called Zolgensma that costs around 14 crore rupees. Rajesh is a constable and Kiran works as a clerk, who together earn seventy thousand a month. They can never gather such an amount on their own.

Until he receives Zolgensma, Yuvansh must take another medication called Risdiplam every 40 days. Each dose costs 6 lakh rupees. He has been receiving it since June, and missing even one dose can worsen his condition. They need 1.5 crore more to reach the goal, but every month they are drowning deeper into debt.

Both parents are forced to work while their sick baby stays with grandparents

“We want to hold him all day but we cannot. We both have to keep working for his injections. Every morning when we leave, his grandparents take care of him and we pray he doesn’t fall sick when we are not around. It feels cruel but we have no choice. We are fighting every day to keep him alive.”– Rajesh

Time is running out. The drug must be given before he turns two or it will be too late. The damage will become irreversible.

This is the only chance to save baby Yuvansh

Every day, this little boy is losing strength. Every day his parents watch him fight a disease that steals the life out of children before they can even learn to walk.

They have exhausted all savings, sold what they could, taken loans, begged for help. But they still need a huge amount to save their child.

Please help save baby Yuvansh. Your support is the only hope this family has.

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