Egor was born in 2009. According to his mother Viktoria Panasenko, the boy was born at full term and was healthy by all indicators.

To find out the diagnosis and why seizures developed, Egor's family went to Moscow.
It turned out that the boy had a severe brain disorder, which cannot be cured.

According to WHO, epilepsy is a chronic disease of the brain. It is described by recurring involuntary seizures. Seizures are the result of excessive electrical charges occurring in the brain cell group. The reason of the disease may be the brain injury in the pre-delivery period, brain haemorrhage, head injury or tumour. According to WHO, up to 70 per cent of people with epilepsy can live without seizures if they are duly treated with seizure medications.

In 2020, Kyrgyzstan, according to the Centre for Electronic Healthcare, had 2,420 children with epilepsy under 14.

When Egor was two years old, he was diagnosed with backwardness. By that time, he learned to walk , spoke a few words, and now, when he is 12, his skills remain the same. Moreover, because he constantly takes drugs, Egor has strong ataxia (difficulties with equilibrium control, disorganised, angular movements).

The situation, according to Panasenko, is aggravated by the fact that parents of children with epilepsy have not only to look for money to buy drugs, but also to search for such medicines.

"Such medications as Depakin, Konvulex, Rivotril are on the list of life-saving medications and are prescribed as required by compulsory medical insurance," Viktoria said. "But the problem is that children with a severe form of epilepsy do not take these medications as they need new generation drugs such as Topamaks, Keppra, Sabril."

It is very difficult to find these drugs in the pharmacies of Kyrgyzstan. Moreover, they are hard to buy in Russia. Parents have to ask their relatives, acquaintances or some people who are concerned and who are abroad to buy and send drugs to Kyrgyzstan. Some drugs may cost up to 10 thousand som (118 dollars) per pack, which is enough for one month only.

Parents had a hard time during the lockdown restrictions and closure of borders. Because of the lockdown, it was almost impossible to deliver drugs to Kyrgyzstan. "It was a kind of despair!

"We were pretty psyched," Viktoria said. "We didn't know what to do when we ran low on drugs! Parents of such children started to share their drugs with each other."

To solve the problem, mothers of children with epilepsy together with the First Children's Hospice wrote an open letter to the president. According to hospice director Olga Trukhanova, they addressed the ambassador of Kyrgyzstan in Moscow, and other consular centres. Finally, after a while, the drugs were delivered to the country via UNICEF.

"The state has to revise the list of essential drugs," Panasenko said. "They should provide with the drugs that really help. We should be able to get those here, in Kyrgyzstan, instead of searching for them everywhere and asking people to bring them here."

Nurmukhamed Babadzhanov, candidate of medical sciences, paediatric neurologist of the National Centre for Mother and Child Welfare, explained to CABAR.asia that such drugs as Convulex and Rivotril are basic drugs and prescribed in most cases of epilepsy.

"As to Sabril, it is a relatively new drug and administered in certain types of seizures," the expert said.

However, according to Babadzhanov, another question that may arise is whether pharmaceutical companies will register new drugs in Kyrgyzstan. According to him, pharmaceutical companies decide whether they will register drugs or not.

Because of frequent seizures, Egor does not attend any centres – neither development, nor rehabilitation ones. According to Viktoria, children with epilepsy cannot attend anything. They cannot go to swimming pools, as trainers are scared that a child might have a seizure in water and might drown. Schools are unaffordable luxury, too. They have no access to education as such children have learning disability.

"We always talk with mothers of such children from other countries in our parental chats," Viktoria said. "They tell us that Russia has various kinds of schools that accept children with epilepsy and other diseases. Of course, they cannot learn sciences, but they can socialise there."

"People see that Egor is different. When we walk outside, everyone stares and whispers," Viktoria said. "If he suddenly has a seizure, people start praying and whispering something, saying "go to a sorcerer", "he was possessed by a demon". The society still has a strange opinion about it!"

On top of that, Egor has problems with his teeth. According to Viktoria, chronic usage of drugs has contributed to it. "He cannot miss his medications because his seizures may go worse," Panasenko said. "They remove calcium and other minerals from the body, which has a negative impact on his teeth."

The problem would not be so significant but for the fact that it is very expensive to fix teeth of children with epilepsy. Treatment can be done only under general anaesthesia, whereas public hospitals do not perform such procedure, and not all doctors can perform such procedures.

"So, we have to visit private dental clinics. One hour of general anaesthesia there costs nearly 10 thousand som (118 dollars)," Viktoria said. "To treat a few teeth, we need to pay at least 60 thousand som (707 dollars). This amount covers both anaesthesia and treatment, and other necessary medications."

According to Viktoria, all these problems cannot be solved for many years. Repeated inquiries from parents to public authorities have failed. The only answer was: no money.

Gulzada Akunova, specialist of the Ministry of Labour, Social Security and Migration, said to CABAR.asia that construction of public rehabilitation centres is not the point so far. According to her, this is all because of underfunding.

Another big problem in Kyrgyzstan is the lack of psychological support to parents. According to Viktoria Panasenko, it's only due to the First Children's Hospice that mothers of children with epilepsy in Bishkek had an opportunity to visit a psychologist. Every Thursday, the specialist provides free of charge services to the parents.

"However, not every mother can visit the specialist," Panasenko said. "It's because she doesn't have anyone to leave her children with."

As part of the project, children, including the ones with epilepsy, can stay at the hospice for a few days when their parents are ill or just want to take a break.

"When children with epilepsy are left at our place, we see that they have fewer seizures without mothers," Trukhanova said. "When a mother comes, she starts to worry about everything like "her child breathes differently", "something might happen". Obviously, parents love their children and worry about them, but such emotions and constant sighing have impact on their children. Therefore, parents need psychological support like the air they breathe."

The Abasbekovs live in a small village of Rot Front in Chui region. It's approximately ninety-minute drive away from Bishkek. Six years ago, a child with cerebral palsy and epilepsy was born to the family.

Baiseit developed epileptic seizures as a consequence of birth trauma. At the age of four months old, the boy lost all sight after severe convulsions. Parents noticed that the boy could not sit up by himself and consulted doctors. When Baiseit was eighteen months old, he was diagnosed with cerebral palsy. Now the boy is bed-ridden, he cannot chew, he can eat only ground food from a bottle. At first, he had up to 15 seizures a day, and later on the number of seizures were decreased to one or two a day due to the treatment.

There are four children including Baiseit in the family. Their father is the only breadwinner in the family, and state benefits and payments under the Personal Assistant system improve the situation somehow. The boy's mother, Gulnara Sagynova, cannot go to work because she has to take care of her son all day long. They cannot hire a babysitter as not everyone wants to sit with such a child, or even if they agree to, they charge too high, which the family cannot afford to pay.

As to the drugs, according to Sagynova, they have big problems with them. It took them almost one year to find a suitable drug for Baiseit. Only Sabril suited them. It is not available in Kyrgyzstan and they have to order it in Czech Republic. Because of its high price, the family sometimes have to ask caring people for help or apply for a loan.

Because of long distance between the village and Bishkek, Baiseit cannot get required medical help at times. Besides, according to Gulnara, it is hard to find a good specialist in public clinics.

They have to recourse to private clinics. One visit there costs nearly one thousand som (11.79 dollars).

Elena Bayalinova, media expert in healthcare, said that the lack of qualified staff in public hospitals is the result of underfunding from the state. Because of the shortage of funds, many health workers cannot improve their qualification, cannot visit foreign clinics to improve their knowledge and study the experience in epilepsy treatment. Low wages force health workers leave public hospitals and work in private centres.

"It would be great if the ministry of health could reach every sector," Bayalinova said. "In our situation, if we cope with one problem, like Covid, we have gaps in other sectors. The budget is like a short blanket, you have to fill the gaps all the time."

According to Bayalinova, the problem with financing is like a broken record, which annoys everyone. It concerns almost all healthcare sectors. Therefore, a comprehensive and structural approach is needed to solve issues, including the ones in provision of services to children with epilepsy.