JAIPUR: After a three-year-old Hyderabad boy suffering from a spinal muscular atrophy (SMA) type 1, a rare genetic disorder, received a Rs 16-crore drug in Hyderabad, hopes came alive for a Bikaner girl’s family which is also struggling to manage Rs16 crore for getting the same injection for a seven-month-old baby who is suffering from the same disease.
Family of baby Noor Fatima, who has been diagnosed with SMA type 1, recently congratulated 3-year-old Ayaansh Gupta’s family who managed to get the Rs 16 crore injection from crowdfunding.
“We are happy that Ayaansh got the jab.
Similarly a girl from Pune is expected to get the medicine from crowdfunding.
These are the two cases which keeps me motivated and my hopes alive.
We are also expecting that we will be able to get the required money through crowdfunding as this is the only option available for me as arranging Rs 16 crore for the injection.
So we request people to help us out in the times of crisis for saving life of my only baby,” said 29-year-old Zishan Ahmed, Fatima’s father who earns around Rs 10,000 to Rs 15,000 per month.
A shot of the US-manufactured drug Zolgensma, which is a one-time gene therapy, costs Rs 16 crore.
This therapy will change genetic composition and synthesize SMN protein.
In SMA, a body does not produce SMN protein, which causes SMA disease.
“Ayaansh and the Pune girl live in bigger cities than Bikaner.
It is difficult to reach people for crowdfunding and Covid is also a deterrent,” said Ramzan Hussain, uncle of the girl.
He said, “We have managed to collect only Rs 40 lakh and we require another Rs 16.6 crore before October as the doctor has told us to get the injection within the first year of birth of the baby for better results.” “We are sharing details of Zishan Ahmed’s account number (37482054850, SBI, branch Jail Road, Bikaner, IFSC SBIN0030346) so that if anyone wants to help him to save his daughter can contribute,” said Shageer Ahmed, cousin of Zeeshan, who is helping in raising funds.
The worry for the family is that they are not getting any financial support from the Centre or the state government.