DHAKA, Oct 25, 2022 (BSS) - For the first time in Bangladesh, gene therapy has been used to treat the incurable neurodegenerative disease named Spinal Muscular Atrophy (SMA) of 22-month-old baby Raihan for free of cost.

Gene therapy for the treatment of neurodegenerative disease Spinal Muscular Atrophy (SMA) is a very expensive treatment, as the price of each dose of medicine is Taka 22 crore.

Raihan is undergoing treatment at the National Institute of Neurosciences and Hospital (NINH). He was given the therapy injection at 10am, NINH Director Professor Dr Quazi Deen Mohammad told a press briefing held at the hospital here today.

But Raihan got the medicine free of cost under a global project, thanks to the efforts of his doctors at NINH and a few strokes of luck.

Spinal muscular atrophy is a rare and complex congenital disorder of the nervous system, which is caused by genetic factors. Doctors said children with the condition cannot sit or stand although their neck is not stiff. Due to weaker muscles their movement is limited and they suffer from frequent shortness of breath. The muscles responsible for breathing gradually weaken, resulting in death.

The Neurosciences hospital gets some 30 patients with SMA every year while Shishu Hospital, Bangabandhu Sheikh Mujib Medical University, Dhaka Medical College Hospital also treat children with the condition.

Unlike most SMA patients, Raihan was lucky enough to be selected in a global project lottery, under which multinational pharmaceutical company Novartis provides their gene therapy medication - Onasemno gene Abeparvovec to two children from around the world every month for free as part of their CSR campaign.

Doctors hope that Raihan will be able to lead a healthy life after the therapy.