“Vaccination against measles begins at one year of age, but Alinur got sick at six months. I was aware of the possible complications, but he recovered quickly. After that, he developed well, and we thought all dangers were behind us. We didn’t even suspect that measles could have complications that manifest years later,” shares Meerim, Alinur's mother.
The first alarming symptoms appeared in 2023. A few days before his fifth birthday, the boy began complaining of severe headaches. At that time, he could speak, but the illness later deprived him of the ability to talk.
“We were hospitalized in the neurology department of the third children's hospital. Examinations showed brain swelling, and the doctors diagnosed him with 'epilepsy.' During treatment, he began to lose function in his arms and legs. We spent a month and ten days in the hospital, but we were discharged because the doctors could not help,” the mother recounts.
Alinur had measles at six months old. The consequence of the virus was a rare brain disease.
The reasons for the illness were not immediately clear to Alinur's parents. Initially, they consulted many well-known pediatric neurologists in Bishkek before heading to India.
“During his treatment, the doctors held consultations. Almost all neurologists were aware of his condition, and no one took on the treatment. Realizing that we wouldn’t get help here, we contacted doctors abroad and went to India after his discharge. It was there that an accurate diagnosis was established and adequate treatment began,” Meerim explains.
Alinur had measles at six months old. The consequences of the virus — a rare brain disease.
Alinur had measles at six months old. The consequences of the virus — a rare brain disease.
Alinur has been under constant treatment for two years. His family dreams only of him living without pain and being able to regain his motor and speech skills.
“It’s unbearable. I gave birth to a healthy child who developed better than his peers, ran, jumped, and spoke non-stop. Now he is bedridden. This illness has destroyed my son’s life and our family,” the mother says with tears in her eyes.
Alinur had measles at six months old. The consequence of the virus was a rare brain disease.
Monthly expenses for treatment and rehabilitation amount to about $1,500. Alinur's father works as a taxi driver, while his mother cannot work as she needs to provide constant care for her son. The state pays her about 8,000 soms as an assistant to a person with a disability, and Alinur receives a similar allowance.
“We have sold everything we could from our property to help our son. We started fundraising when there was nothing left to sell and no one to ask for help. I hope that the people of Kyrgyzstan will understand us. We need your help, please help us,” the mother says bitterly.
I really want my son to live and not feel pain.
Alinur had measles at six months old. The consequences of the virus — a rare brain disease.
Alinur had measles at six months old. The consequences of the virus — a rare brain disease.
