“Every parent dreams of giving their child a future filled with joy, growth, and laughter. For our 8-month-old daughter, Hridika, that dream is shadowed by the relentless grip of Spinal Muscular Atrophy (SMA) Type 1 - a condition that has made even the smallest movements an uphill battle. We are reaching out to you with a heartfelt plea to join us in giving Hridika the chance at life she truly deserves.” - Haimanti Das 

Our Joy, Our Hridika

When Hridika was born, it was the happiest moment of our lives. Family and friends celebrated her arrival, calling her the "Goddess of Prosperity." But our joy was short-lived. As the weeks passed, we noticed something alarming - Hridika wasn’t moving her neck or lower body. She didn’t respond to our playful gestures, and her movements were heartbreakingly absent.

After countless tests, our fears were confirmed: Hridika was diagnosed with SMA Type 1 at just 5 months old at the National Neurosciences Centre, Calcutta.

What Is SMA Type 1?

• Spinal Muscular Atrophy (SMA) Type 1 is the most severe form of a genetic disorder that affects the muscles used for movement, breathing, and swallowing. 
• In SMA, a crucial gene, SMN1, is either missing or malfunctioning. Without it, the body cannot produce enough protein to maintain motor neurons, leading to progressive muscle weakness and atrophy.

A Glimmer of Hope: Zolgensma

• For children with SMA Type 1, Zolgensma, a revolutionary gene therapy, offers hope. This one-time treatment can replace the defective gene and significantly improve muscle strength and quality of life. 
• However, the cost of Zolgensma is staggering - ₹16 crores. Without it, the progression of SMA is inevitable, and the prognosis is devastating.

“Hridika struggles to move her neck and lower body. She requires oxygen support and an NG tube for feeding and medications. Recently, she started treatment with a drug called Risidiplam, which helps slow the progression of the disease. However, Risidiplam is not a cure—it is only a temporary measure. Her condition demands urgent intervention with Zolgensma, but the therapy’s astronomical cost is beyond our reach.” - Hridika’s family 

Our Financial Struggle

As a family, we have done everything possible. My monthly income as a school teacher is ₹40,000, and we’ve already spent ₹18-20 lakhs on her care. With the help of friends, family, and savings, we’ve managed so far, but raising ₹16 crores feels insurmountable without help.

A Dream for Our Daughter

Our dream is simple: to see Hridika live a healthy, fulfilling life. We want her to experience the joys of walking, playing, and growing up like every other child. With your help, we can give her that chance.

Donate now and share Hridika’s story to help her successfully get 16Cr Zolgensma. 

How to Help? 

Donate: Please click the donate button to donate and help Hridika undergo gene therapy and overcome SMA.  

Share: Share my daughter’s story with your friends and family. Kindly ask them to share and re-share her struggles on WhatsApp, Instagram, Facebook, Twitter, and other social media channels.

দান করুন: অনুগ্রহ করে দান করার জন্য অনুদান বোতামে ক্লিক করুন এবং হৃদিকাকে জিন থেরাপি নিতে এবং SMA কাটিয়ে উঠতে সাহায্য করুন।  

শেয়ার করুন: আপনার বন্ধু এবং পরিবারের সাথে আমার মেয়ের গল্প শেয়ার করুন। অনুগ্রহ করে তাদের হোয়াটসঅ্যাপ, ইনস্টাগ্রাম, ফেসবুক, টুইটার এবং অন্যান্য সোশ্যাল মিডিয়া চ্যানেলগুলিতে তার সংগ্রামগুলি শেয়ার করতে এবং পুনরায় শেয়ার করতে বলুন৷

**Disclaimer - SMA is a progressive disease that causes Hridika’s muscles to weaken over time. To prevent further deterioration and slow the progression, Hridika 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.**