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Urgent Appeal for Life-Saving Treatment: Help Our Child Defeat SMA

Dear Esteemed Donors,

I hope this message finds you in good health and high spirits. Today, I write to you not as a mere petitioner but as a grandparent—one who is grappling with the unimaginable pain of watching their child fight a relentless battle against Spinal Muscular Atrophy (SMA).

Our baby, little 19-month-old Shireen, is a bright-eyed, resilient soul who dreams of running, playing, and laughing like any other child. Her short-term goal is to play football with other kids in the park. The arrival of my first grandchild filled our homes and hearts with joy and laughter that only daughters can bring in. But this disease has woven invisible chains around her tiny body, restricting her movements, stealing her strength, and threatening her very existence. We are desperate to break these chains—to give her a chance at life, at joy, at all the beautiful moments that lie ahead.

The disease is caused by a missing gene (SMN-1) in her DNA. SMA is a disorder affecting the motor neurons (nerve cells that control voluntary muscle movement). These cells are located in the spinal cord. Because the muscles cannot respond to signals from the nerves, they atrophy i.e. weaken and shrink from inactivity.

The gravity of the progression of the disease is such that the voluntary muscles of the body (including respiratory muscles) cannot respond to the signals from motor neurons, causing the former to shrink and atrophy. As the disease progresses, if left untreated, it will finally culminate in an inability to carry out even basic tasks like breathing and swallowing. Please follow this link for further information.

https://hopkinsmedicine.org/health/conditions-and-diseases/spinal-muscular-atrophy-sma#:~:text=What%20You%20Need%20to%20Know,weaken%20and%20shrink%20%E2%80%94%20from%20inactivity.

The Ray of Hope: Zolgensma

In our darkest hours, a ray of hope emerged—the gene therapy called Zolgensma. Developed by Novartis, this groundbreaking treatment has the power to rewrite Shireen’s genetic destiny. It promises to add the missing component to her gene code, halt the progression of SMA, allowing her muscles to regain strength and vitality. It’s not just a medication; it’s a lifeline—a chance for our baby to experience the simple joys of childhood.

The Cost of Hope: Beyond Our Means

But here lies the heart-wrenching truth: hope comes at a staggering cost. Zolgensma is one of the most expensive medications in the world for USD 1.7 Million (approx ₹14.3 Crores). We find ourselves standing at the crossroads of love and desperation. We have exhausted our lifetime savings, and borrowed from friends and family —all to inch closer to the required funds. Yet, the finish line remains elusive.

We, however, seek solace from the fact that Good Samaritans have supported many families to reach this seemingly insurmountable goal.

A Plea for Compassion and Solidarity:

This is where you, our esteemed corporate partners, can make an indelible impact. Your resources, whether in your capacity or through Corporate Social Responsibility (CSR), extend far beyond balance sheets and profit margins. They touch lives—they shape destinies. We implore you to consider Shireen’s life as more than just a line item. It’s a story waiting to be rewritten, a symphony yearning to be played.

As a family, we appeal to Individual donors to donate generously to this cause. Please pass this on to your family, friends, and professional networks.

A little girl depends on your generosity. We hope you can find it in your heart to make her

How You Can Help:

1. Donate Generously: Every rupee counts. Your contribution, no matter how small or large, will bring us closer to our goal.

2. Spread the Word: Share Shireen’s story within your organization, among your professional and personal networks. Awareness is a powerful catalyst for change.

Together, We Can Rewrite Shireen’s Story

Imagine the joy of seeing her take her first steps, hearing her laughter fill our home, playing football with other kids, and watching her grow into the remarkable person she is destined to be. Your compassion can turn this dream into reality.

Contact Us:

If you wish to be part of Shireen’s journey, please contact us at [email protected]. We welcome your questions, empathy, and partnership.

Thank you for reading our plea and for being the beacon of hope that our family desperately needs.

With heartfelt gratitude,

Deepa S

(Shireen’s Grandmother)

Disclaimer - 

SMA is a progressive disease that causes Shireen's muscles to weaken over time. To prevent further deterioration and slow the progression, Shireen urgently needs the drug Risdiplam to preserve muscle function only if it is prescribed by the doctor. While the fundraising for Zolgensma is underway, starting Risdiplam immediately is a critical step to safeguard the child’s life and preserve muscle function.