One year and 18 days old Zuha Zainab from Coimbatore received an injection at a hospital in New Delhi on Saturday which her parents barely thought they could arrange for her. But luck favoured the couple and the kid.
Baby Zainab was among the four children suffering from rare genetic disorder spinal muscular atrophy (SMA) for which a gene therapy that costs over 16 crore was administered free of cost at Sir Ganga Ram Hospital, New Delhi, on Saturday.
Zainab and the three other kinds emerged winners of a lottery programme which made them receive the single dose gene therapy Zolgensma.
We had registered the babys name with Cure SMA which works for children who require treatment for SMA. By the end of May, we were informed that our baby was one of the winners of the lucky draw conducted by the supplier of the drug, said Ayisha Firdous, the babys mother over phone.
She said that the therapys cost would be more than 16 crore as it is imported with tax.
The drug infusion started at 3.30 p.m. and was completed by 4.15 p.m. We have been asked to stay in Delhi for four weeks for weekly follow-up tests, she said.
Ms. Firdous and husband V. Abdullah had lost their first child, a male baby, due to SMA in 2018 when he was six-months-old.
The first child and baby Zainab were diagnosed with the SMA, which causes weakness and wasting in muscles, by S. Velmurugan, a paediatric neurologist based in Coimbatore. The doctor had advised the parents to be part of SMA support communities which finally led them to get the drug free of cost though a lottery win.
A couple from Komarapalayam in Namakkal is currently seeking support for the therapy for their two-year-old daughter Mithra, Ms. Firdous added.
