Manikganj's child Ryan Mostakin is on the path to recovery from a rare disease thanks to an incredible opportunity. At the age of just two, he made headlines for taking a medicine that costs about 22 crore taka in Bangladeshi taka.

In October 2022, Ryan was injected with a gene therapy drug called 'ZolgenSMA', developed by multinational pharmaceutical company Novartis, at the National Institute of Neuro Sciences and Hospital. However, his family did not have to spend any money for it—Ryan got the medicine for free after winning the lottery.

Born on November 26, 2020, Ryan's arms and legs were weak since birth. When he was taken to the National Institute of Neuro Sciences and Hospital at the age of nine months, he was diagnosed with a rare genetic disease called Spinal Muscular Atrophy (SMA). This disease weakens the muscles of the body and makes him unable to move.

There are three recognized ways to treat SMA in the world—Roche's syrup, Biogen's injections, and Novartis' gene therapy. But the most modern and expensive of them is ZolgenSMA.

Novartis launched the 'Global Managed Access Program' in 2020, where children with SMA in poor countries had the opportunity to receive free medicine through a lottery. The condition was that the child must be under two years of age and SMA must be confirmed by a gene test. As of December 2024, about 300 children from 40 countries around the world had received medicine in this way. Among them, Rayyan was the only one from Bangladesh who was selected in the lottery.

Dr. Zubaida Parveen, Assistant Professor (Child Neurology Department) of the National Institute of Neurosciences and Hospital, applied for the lottery on behalf of Rayyan. She said that she applied for a total of six children, but Rayyan was the lucky one to get the opportunity.

Rayyan's physical improvement has been clearly visible since taking the medicine. According to doctors, he can now sit, his arms and legs are getting stronger, and there is a possibility of gradually returning to normal life.

According to hospital sources, another child in Bangladesh has received this medicine. However, he did not buy the medicine through a lottery, but at a negotiated price. The National Institute of Neurosciences and Hospital cooperated in this.

This rare experience has become a ray of hope not only for Ryan's family, but also for the medical system in Bangladesh. Because just as it is almost impossible to get invaluable medicine worth crores of taka, it is also extremely rare for a child's life to be changed through gene therapy.