Two years ago, on April 9, 2024, a significant event occurred in the life of two-year-old Sulaymon Rahimov: he was administered the drug Zolgensma — the most expensive injection in the world, costing about $1.4 million at that time. This was made possible thanks to the incredible efforts and support not only of the people of Tajikistan but also of people from all over the world who came together to save the life of little Sulaymon.
Today, two years later, we decided to find out how Sulaymon is feeling and what changes have taken place in his life.
“He’s become a little rascal”
Sulaymon’s mother, Manizha, happily shares positive news about her son. She says that Sulaymon has changed a lot over the past year.
“He’s grown, become a little rascal, sings songs, and fights with his little brother every day,” Manizha says with a smile. Sulaymon continues to delight his family, and although he still cannot walk independently, the changes in his condition are noticeable.
Currently, Sulaymon is undergoing rehabilitation in Moscow. Manizha added that the family tries to travel for rehabilitation every two months to not miss important moments in the recovery process.
“Sulaymon is feeling good, even though he does not walk independently. But his arms have noticeably strengthened, he stands, and rolls around the whole room. Many steps have been taken towards recovery,” says his mother.
She also notes that despite the lost time, which led to the loss of some skills, Sulaymon becomes stronger every day. “We continue to move forward in small steps,” adds Manizha.
The boy engages in activities for about 5 hours a day, and these sessions are becoming more and more enjoyable. Previously, he often cried, but now he enjoys the activities and even reminds his mother of the next activity on the schedule. “This was one of the biggest achievements — he is no longer afraid and happily begins the procedures,” says Manizha with satisfaction.
The most important thing is that the disease is not progressing
Manizha emphasizes that the biggest success is that Sulaymon’s disease is no longer progressing. “He is alive, and he is with us — and that is already a huge achievement!” she adds.
Manizha does not forget to thank all the kind people who helped her son during difficult times.
“May the Almighty reward you with goodness for this kindness. We remember and love everyone!” she said.
The long-awaited life-saving injection
The two years that have passed since Sulaymon was administered the drug Zolgensma have shown how important support is — not only financial but also moral. Sulaymon’s difficult story shook the entire country. The only way to stop the progression of his rare disease was the expensive drug Zolgensma, whose cost made it into the Guinness World Records.
The initial cost of the drug was about $2.125 million, but thanks to an agreement between Russia and the manufacturer Novartis, Sulaymon was able to receive the injection for $1.4 million.
The fundraising was closed in December 2023. When Manizha was losing hope, as there was not enough money, an anonymous benefactor from Russia made the decisive contribution, closing the remaining amount — $204,000. And little Sulaymon received a chance at life.
Before administering the drug, the child took the supportive medication “Risdiplam” for several months, which slowed the progression of the disease but could not cure it. At the same time, one dose of it cost $8,000.
On April 9, 2024, when Sulaymon finally received the long-awaited “life-saving injection,” his mother wrote:
“The wait was long and hard, but we made it, and now we can breathe a sigh of relief. We cry with happiness that we overcame this journey together!”
