Alinur Maratov

The measles virus has returned after all these years and is rapidly damaging the brain of seven-year-old Alinur.

Music was always playing in their home. The two brothers would run around the room, argue over their toy cars, and laugh so loudly that the neighbours would smile. In the evenings, the whole family would gather around the table, and on weekends, they would head to the mountains for their traditional picnics. 

Alinur, the eldest son, was the pride of the family. Intelligent and observant, he remembered everything after just one attempt. He started speaking early, learned to read faster than his peers, and loved dancing and playing the komuz. He would often say he wanted to become a policeman to protect his family and vulnerable people.

No one could have imagined that he would be the one in need of protection.

At six months old, Alinur contracted measles—he was too young for the vaccination at that time. Fortunately, the illness passed easily, and his parents breathed a sigh of relief, thinking it was all over. Alinur grew up healthy, active, and curious. However, the virus had not disappeared; it had been lying dormant.

A few years later, just days before his fifth birthday, Alinur began suffering from severe headaches. He was still able to talk, hug his brother, and ask for music to be played, but eventually, his speech began to fade. His family rushed him to the neurology ward, where doctors detected brain swelling and suspected epilepsy. After spending a month in the hospital, enduring drips, injections, and endless tears, his condition worsened. His arms grew weak, and his legs stopped responding. In search of answers, his parents consulted nearly every pediatric neurologist in Bishkek but found no solutions. Desperate to save their son, the family decided to fly to India.

The diagnosis was confirmed: subacute sclerosing panencephalitis, a rare and severe complication that can occur after measles and leads to the destruction of brain cells. This disease gradually takes away a child's ability to speak, move, and maintain independence.

Today, Alinur no longer speaks, but he understands everything; he hears, feels, and is aware of his surroundings. He finds the treatments difficult to endure, is afraid of injections, and does not like hospitals. Nevertheless, he perseveres through it all.

His younger brother, Bekbol, who is just six years old, struggled for a long time to understand what had happened. The two brothers were always together—drawing, dancing, building ‘cars’ out of pillows, and playing policemen. When Alinur, his older brother, stopped playing, Bekbol would cry and ask, “Why doesn’t he run around with me anymore?” Their parents were at a loss for words.

Alinur’s father is a simple taxi driver who loves giving his son rides behind the wheel. The boy could sit there for hours and ‘help’ drive the car. Those were their special moments. His mother used to work as a nursery teacher at a state-run nursery, but now she cares for her child around the clock.

The cost of treatment and ongoing rehabilitation is approximately $1,000 per month. 

Rehabilitation involves more than just exercises; it is crucial for preventing deterioration. It provides an opportunity to preserve movement, maintain muscle tone, and ensure that Alinur's body remembers how to bend his arms and legs. Unfortunately, the family once faced financial difficulties and had to miss three months of rehabilitation. This had serious consequences: his limbs stopped bending, and his tendons shortened by 3 to 4 centimetres. He ultimately needed surgery to restore his mobility. 

Every missed session represents a setback, and each break in treatment brings us closer to a dire situation.

The family has sold everything they could, and they are managing to cope thanks to the support of each other and their relatives. They continue to hold onto hope. Alinur loved the cartoon "Bambi" and cried when the fawn was left alone. He wanted to help and protect the character. Today, Alinur himself is that same defenceless fawn who must not be left alone.

From his mother’s appeal:  

“I know the illness is serious and that it cannot be completely cured. But I believe that rehabilitation can help preserve what remains. I ask you—please help my son live without pain. We need to know that we are not alone.”

Kyrgyzstan and Kazakhstan have always been countries where another’s misfortune becomes a shared concern. Where people unite to save a child. Today, the fate of this little boy depends on our solidarity.

Every som or tenge — is another day of treatment.

Every donation is a chance to keep the campaign going.

Every bit of your support is a ray of hope.

Please help Alinur continue his fight! May his story be a tale not only of pain, but also of human strength, compassion, and unity.