When baby Shavez was diagnosed with spinal muscular atrophy, his future was bleak. Patients typically suffer muscle weakness, mobility problems, breathing issues and other effects, often not surviving beyond their second birthday. Pharmaceutical company Novartis had developed a gene therapy drug to cure the condition – but costing millions of dollars, it was out of reach for most people.
Dr Salman Kirmani and his team from the Aga Khan University Hospital Pakistan applied for Shavez to be one of a hundred patients per year – and the first in Pakistan – to receive the drug for free. After tests, staff training and managing the logistics, they were able to give Shavez the drug just before his second birthday. With continuing free care and consultations, Shavez has shown significant improvement.
“I thought our lives had ended, but we were living in hopes that there might be a miracle and one of our babies would survive,” said Shavez’s mother, Mrs Liaqat. “And there we have it, Shavez is recovering day by day. It is all because of the hard work of the doctors, nurses and staff at the Aga Khan University Hospital."