By: Krisha Gohil, Suraj Pandey
Published On: September 22, 2021
When Rs 16 crore challenged a 3-month-old’s priceless life, you all spared whatever you could to nip a deadly disease in the bud.
It all began when 2.5-month-old Dhairyarajsinh stopped moving his legs and lost his grip and neck movement. As the inactivity in the toddler’s body persisted, Rajdipsinh and his wife grew tense. Their son was missing his developmental milestones. After consulting a doctor in Ahmedabad city, they got their son’s genetic tests done. What came back in the reports was a never heard of disorder- Spinal Muscular Atrophy type-1.
Spinal Muscular Atrophy type-1 is caused due to a missing gene, leading to muscle degradation and complete loss of muscle movement down the line. Although SMA affects 1 in 11,000 children every year, it is the #1 cause of global infant death due to genetic disorders.
Coming from a humble abode in Gujarat, the boy’s family had never even heard of such a disease, yet only a year remained to raise $ 2.1 million or Rs 16 crore for the world’s costliest medicine and Dhairyarajsinh’s life. That's because once a child turns 1, the muscle atrophy speeds up. The damage caused by SMA ends up taking the lives of kids before the age of 2.
FDA approved, Rs 16 crore ZOLGENSMA is a genetic replacement therapy drug and a 1-time cure for SMA.
But the world’s costliest medicine became attainable because of 2.6 lakh ImpactGuru donors like you! Within 3-months of starting the fundraiser, it reached Rs 16 crore, making him one of the few children to get a chance to beat SMA.
On May 5, 2021, at 10.30 am, the fateful moment arrived that ImpactGuru donors from around the world had been waiting for. Dhairyarajsinh was finally administered ZOLGENSMA at P. D Hinduja National Hospital!
"We didn’t have the slightest of expectations that we would be able to reach Rs 16 crore so quickly. People all over Gujarat and the world showered their love for Dhairyarajsinh. To all the 2+ lakh ImpactGuru donors, I express my sincerest gratitude. It is because of you that Dhairyaraj, our son, will live a long and peaceful life. We will raise Dhairyaraj to be just as kind and giving as you all are!"
- Rajdipsinh Rathod, Dhairyarajsinh’s father.
Today, Dhairyaraj’s neck movement is restored by 15%. He can grip things and move his lower arms and feet. It is just the beginning of the milestones that Dhairyraj will achieve with time. On behalf of Dhairyarajsinh, we salute the selfless spirit of all those who poured in openly for his life. With your generosity, we are sure that more kids with SMA will benefit in the coming time.