Delhi: When the Singh family in Delhi was blessed with a baby girl seven months ago, the parents were eager to give her the finest possible start in life and planned her welcome well in advance. However, their joy was short-lived because the mother’s intuition revealed a startling diagnosis. When Zaisha Kaur turned 6 months old, her mother took her to the doctor for a check-up, after observing that she was unable to hold her neck or roll over on her stomach.
She was diagnosed with Spinal Muscular Atrophy (SMA) Type 1, a debilitating disease that primarily affects infants. It is characterized by muscle wasting and progressive loss of motor function, hampering children’s movement, breathing, or swallowing functions. SMA Type 1 is considered one of the most severe forms of the disease, and without prompt intervention, it often leads to a tragically short lifespan.
According to medical experts, SMA Type 1 is not just a battle for one family; it is a reflection of the broader issue of access to healthcare for rare and complex diseases in India. Treatment options for SMA Type 1 are limited, but recently, ground-breaking therapies have emerged that can significantly improve the quality of life and extend the lifespan of affected children. However, these treatments come at a staggering cost, making them inaccessible for many families in India.
With a travel business that is just returning to normalcy after the COVID-19 downturn, the Singh family has been left with no option but to embark on a medical crowdfunding journey to secure the life-saving treatment for their beloved child.
“When the doctors told us that there is just one drug which will save Zaisha’s life, we immediately decided that we will get it for her, come what may,” said Pawanjot Singh, Zaisha’s father. “We have also applied for the patient access program by the drug manufacturer. But we know there are several people across the globe who have applied and are waiting for the same. Hence, we are also trying our best to gather money so we can buy the drug for her as soon as possible.”
Currently, the baby is undergoing occupational therapy and physical therapy to keep her muscle movements functioning. She is also on devices to help keep her lungs healthy and strong. “The current therapies, machines, and medicines are already taking up my family’s savings. We are doing our best to ensure her body is ready for the drug once she receives it. All we need is some miracle to happen so that our funds are raised soon,” Pawanjot continued.
The family, facing the overwhelming financial burden of treatment, has found a glimmer of hope through Impact Guru, India’s leading medical crowdfunding platform, dedicated to helping them raise the necessary funds.
Piyush Jain, Co-Founder and CEO of Impact Guru says, “We are committed to helping families facing medical crises by providing a platform to connect with a community of donors who can contribute to life-saving treatments. We have seen the power of medical crowdfunding in enabling the treatment of the most complex cases in children. We, along with Zaisha’s family, hope to gather the necessary funds to access the specialized medical care that the child urgently requires.”
Earlier this year, another child, Kanav Jangra needed one dose of this same injection to beat SMA. Kanav’s father started a crowdfunding campaign with Impact Guru. Around 1.5 lakh people, including noted officials from the government, film and TV personalities, and the general public successfully contributed for the little boy’s treatment.
“With immense efforts, we successfully enabled Kanav’s treatment by raising INR 10.5 crore for the life-saving drug in July 2023,” said Piyush. “I am certainly positive that with the same generosity and unwavering support, we will be able to offer Pawanjot’s baby too a chance at a brighter and healthier future,” he concludes.
