A month after gene therapy, Raihan can now move, sit up and talk

Twenty-two-month-old Raihan's parents at one point had almost given up hope of saving their child, who is suffering from the rare neurodegenerative disease Spinal Muscular Atrophy (SMA). Thanks to his doctor's active role in getting Raihan an expensive gene therapy free of cost under a global project, things have now changed for the Manikganj family.

One month after receiving the gene therapy injection, which is worth Tk22 crore, Raihan can now sit up with a little support, move on his own and speak small sentences.

On 24 October, Raihan was administered the medicine at the National Institute of Neurosciences Hospital. Doctors kept him under observation for a few days before sending him home.

On 21 November, Raihan's family brought him back to the Neurosciences hospital for a follow-up. Other than conducting some tests, doctors gave him physiotherapy and speech therapy and also taught his mother how to continue therapies at home.

Raihan, on the November morning was visibly different. He was laughing, talking and even singing the recently gone viral song – Shada Shada Kala Kala – which he picked up from the phone.

Dr Jobaida Parvin, Raihan's physician, was recording his activities. She was instructing Raihan to do certain things like holding the smartphone, raising his hands above his head, all of which the toddler was doing without trouble.

Doctors are optimistic that Raihan will eventually learn to walk after regular physiotherapy.

From Raihan's diagnosis to enrolling his name in the global project, his physician Dr Jobaida Parvin played a vital role in bringing the medicine to the country after Raihan's name came up in the lottery.

Under the global project, multinational pharmaceutical company Novartis provides their gene therapy medication Onasemnogene Abeparvovec to two children from around the world every month for free as part of their CSR campaign.

"Raihan has been improving. He can now raise hands against gravity. He can also move his legs and move side to side," said Dr Jobaida Parvin.

"He has also become very fluent in his speech," Dr Jobaida said, adding, "We hope with continued physiotherapy, Raihan will be able to walk."

Spinal muscular atrophy is a rare and complex congenital disorder of the nervous system, which is caused by genetic factors.

Doctors say 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.

Rafiqul Islam, Raihan's father from Nobogram of Manikganj, currently lives in Saudi Arabia. His wife Reena Akhtar gave birth to their child Raihan after 9 years of their marriage. Nine months after Raihan's birth, he was brought to the Neurosciences hospital when he was unable to sit or move his arms and legs. Eventually Raihan was diagnosed with SMA.

"I cannot express the joy I feel when I see my boy moving his hands and feet and trying to get up," Reena Akhtar told The Business Standard.

"In the early days of his treatment when we were told there is no medical treatment in Bangladesh, I cried a lot. Later, the doctor told us if we are lucky, Raihan will get an injection that costs Tk22 crore. My son is now getting better day by day. Now I can dream that my son will be able to walk," she added with tears of joy in her eyes this time.