Teera’s parents, appealing to the people to donate money to them, said that so far, there are no treatments for this disease in India, and the only way for the child to lead a normal life is through the Zolgensma therapy, which is a one-time gene replacement therapy they would need to import from the US. It could be a potential cure for Teera, allowing her to not only live for an extended time, but also to lead a quality life.
Apart from this, there are other treatment options, but they need to be cared for during the entire lifetime due and also incurred significant costs every year.
The parents also stated that Zolgensma is available in the US commercially for a cost of $2.1 million or Rs 16 crore, which is a cost they are unable to bear on their own.
Paediatric neurologist Dr Neelu Desai said that the infant is among the youngest patients she is treating currently, and if Teera fails to get the gene therapy, she would be able to survive only for about a couple of years. Till five years ago, the disease had no treatment, but now gene therapy is available and Teera has been registered for it.
She also said that in case an infant is not able to develop motor skills properly or the infant’s body feels very soft, the parents must consult paediatricians. Moreover, parents having infants with SMA could have subsequent children with the same disease, of which there are about 25% chances.
ImpactGuru CEO and Co-Founder Piyush Jain said that over 10,000 donors have stepped up so far and collectively donated more than Rs 4.11 crore to support baby Teera.