Coimbatore: A one-year-old girl, who was diagnosed with spinal muscular atrophy (SMA) type 1, in the city got a new lease of life on Saturday after she was administered the gene therapy drug Zolgensma that costs Rs 16 crore at a multi-specialty private hospital in New Delhi.TOI had in March reported how the parents of Zuha Zainab, of Podanur, were trying to raise funds for the medicine through crowdfunding platforms.
Speaking to reporters, the girl’s father, Abdullah, said Zuba was the lucky winner of the global managed-access programme of Novartis, a Swiss drug maker.Zuba was diagnosed with SMA type 1 in December last year.
Abdullah said doctors had then told them that the child would survive only for a year because of the rare genetic disorder.However, after coming across news reports of how a baby – Teera Kamat – with a similar disorder in Mumbai survived after being administered Zolgensma, Abdullah approached Bengaluru Baptist Hospital, which registered Zuba’s name with Novartis to avail the drug based on the lucky draw.Meanwhile, Abdullah and wife Ayisha Firdous moved to New Delhi in March and petitioned the Prime Minister’s Office, Finance Minister’s Office, and other NGOs, hoping to save their daughter.
On Saturday, Abdullah got a call stating Zuba has won the lucky draw and could avail the one-time gene therapy.
Abdullah said Zuba had successfully undergone the gene therapy at Sir Ganga Ram Hospital in New Delhi.