“Support Baby Khushi Yadav’s Fight Against SMA — Every Day Counts, Every Bit of Help Brings Hope. Kindly contribute and share to Bring Her Zolgensma Treatment Closer.”

Her Story: A Fight Against SMA

My name is Aarti Kumari Yadav. I am a mother, and I am watching my only child, 20-month-old daughter, Khushi, fight the bravest battle of her life against Spinal Muscular Atrophy (SMA) Type 2, which is slowly eating her life. She can not stand or walk, has lost reflexes in her ankle and knee, is losing strength to keep her back straight, and frequently gets long bouts of cold requiring a nebuliser. A progressive disease, leading to an eventual loss of life, which every parent dreads to even dream of.

Her name means "Happiness," and she has filled our lives with more joy than we ever thought possible when she came to this world on 09/02/2024. Her smile can light up the darkest room, and her spirit is so bright and aware. But every day, this cruel disease tries to dim that light. We have a chance to stop it, but we cannot do it alone. We need your help to secure her only hope: a one-time gene therapy called Zolgensma from Novartis, costing Rs 16 cr.

A Mother's Plea: What is SMA?

As a mother, my instinct is to protect my child. But how do you protect her from something inside her own body?

Khushi, my little girl, has been diagnosed with SMA Type 2. It is a rare genetic disorder affecting 1 in 10,000 children. It is caused by the mutation or deletion of the SMN1 gene, which is responsible for producing a vital protein needed for motor neurons. Without it, these neurons fail to function, leading to:

· Progressive muscle weakness

· Loss of movement

· Swallowing and feeding difficulties

· spine curves sideways

· Breathing problems, leading to respiratory failure

“SMA is a thief in the night, silently stealing the strength from my daughter’s limbs, but it can never touch the fierce light in her eyes.”

When I look into Khushi's eyes, I see a vibrant little girl who wants to explore the world. I see the determination, I hear her laughter, and I feel her love. I also see the frustration when her body won't do what her mind wants it to. This is the heartbreaking reality of SMA.

The Light at the End of the Tunnel: Zolgensma

In our deepest despair, we found a beacon of hope: Zolgensma.

This isn't just a medicine; it's a one-time miracle treatment. It is a one-time intravenous (IV) infusion and works by delivering a functional copy of the SMN1 gene to help restore motor function and prevent disease progression. Zolgensma can allow children to gain mobility and strength, giving them a chance to live.

The challenge is its astronomical Cost of treating this: ₹16 crore, which, after tax waivers and the instalment scheme from Novartis, comes to an estimated cost of treatment of ₹9.5 crore.

“Hope is the little voice you hear whisper ‘maybe’ when the entire world is shouting ‘no’.”

Zolgensma is our "maybe." It is the promise of a future where Khushi is not defined by her disease, but by her dreams.

The Uphill Task

The clock is ticking for us; the Zolgesma gene therapy has to be administered as early as possible before the age of 2 years. We have four months before Khushi turns 2 years on 09/02/2026. We are racing against time. Not only is her body losing strength and degenerating, but her treatment window is also narrowing. In the meantime, on the advice of doctors, she has been started on risdipalm, an oral medicine to slow down her motor neuron degeneration temporarily. This oral syrup, one bottle itself costs Rs.. 6.5 lakh lasting only 30 days.

We Cannot Do This Alone

As parents, we would give anything for our child. The cost of this treatment is astronomical, a sum that feels insurmountable. But we believe in the power of community. We believe that when many people come together, miracles can happen.

· Your support is not just a donation; it is a lifeline.

· Sharing our story helps us reach compassionate hearts we could never find on our own.

· Every contribution, no matter the size, is a step closer to saving our daughter’s life.

“Sometimes, miracles are just good people with kind hearts.”

We are asking you to be that miracle for Khushi. We are asking you to be her angel who helps a baby get her future back.

Join Us in Khushi's Fight

Please, help us to save our daughter's life and give her the childhood she deserves. Help us turn her story from one of struggle into one of triumph. All our hope lies in your support and contribution today. Pls donate for her treatment and share her story.

You can reach out to us on:-

Contact: [email protected]

Follow Our Journey: https://linktr.ee/khushi_fights_SMA

बच्ची खुशि को स्पाइनल मस्कुलर एट्रोफी (SMA) टाइप 2, एक आनुवंशिक बीमारी है।

Zolgensma नामक जीवन रक्षक जीन थेरेपी उसके जीवन को बचा सकता है।

इस इलाज की लागत ₹9.5 करोड़ है।

कृपया मदद करें और इसे साझा करें, ताकि अन्य लोग भी इस बच्ची के जीवन रक्षण कार्य के लिए प्रेरित हो सकें।

With all the hope in my heart,

Aarti Yadav (Khushi’s Mother)