The mystery of mass disease/ Alarming data on autism and associated diagnosis, what happens in Vaun e Deja?

2024-02-21 21:21:28Fokus SHKRUAR NGA REDAKSIA VOX
Wow of Deja

Here, we are in Vau e Deja. A small municipality in the north of the country, reporting massive numbers of autism and mental illness. Certain villages report frightening statistics, as the number of sick people can equal the number of healthy residents.

"Given the lack of services in the territory and the assessment of the immediate needs of these children, we have selected 25 children to receive the service. The needs are much greater because the entire territory is not covered by other services for the disabled and it means that we have this service uncovered", said Çuka Babani, the social service of the Basque Country.

"Therefore, the state must roll up its sleeves and start making serious investments... we cannot rely on the fact that the support is only family members because it is simply impossible," said the epidemiologist, Ilir Alimehmeti

According to the 2011 Census, a total of 30,000 inhabitants lived in Vaun e Deja, in the village and in the city. The 2023 census data have not yet been released, but it is thought that today no more than 20,000 residents live there. In some villages, you hardly see people. Of the few that are left, a significant number have autism spectrum disorders or mental health issues. Officially, over 1,000 people with problems are reported, but here we are only talking about the reported figures. The number of sick people is actually thought to be 2 to 3 times more. There are those who refuse to admit that they have children with autism, mental disorders, or any other diagnosis. Others have never seen a doctor to understand their problem.

'His father abandoned him', drama in the family of a teenager with autism and related diseases

We are in the village of Kosma? in the municipality of Vau t Deja. This is ENDER. He is 14 years old. His diagnosis is autism and schizophrenia. He is waiting for us with a toy pistol in his hand, where he asks us to stop, as he will notify the State Police. This is not an unknown episode for the family members, the physiotherapist, sister Sofia Ukaj and the psychologist Kristela Pjetri who meet him constantly.

The mother, Agime Sulejmani, says that her son was born sick, but she could not take care of him as she would have liked. She divorced her husband, who decided to abandon Ender to Mother Teresa's sisters in Elbasan. The day before Ender turned 6 months old, Mother Teresa's sisters knocked on her door and asked her if she would take care of her son or leave him, never to see him again.

I got married in 2009, God forgave my son, I had no place to raise him, only a shack, I got divorced, my husband took the son to Teresa's sisters and mother in Elbasan. They asked for his mother, they told me whether she accepts the child or not, I accepted, raise the boy so that he does not leave him on the streets, I live only for him, for no one else', said Agime Suljemani, the mother

Dawn was reunited with her son, but another drama would begin. Her choice was not well received by her brothers and sisters. They asked him to leave their house with his son. The only one who supported him was his mother, who is 80 years old today. Ender's mother is afraid that after her death, she and her son will be left between 4 roads.

The mother's painful confession about the son with autism: He beats me but I will bear it, I have a child

Throughout these 14 years they have faced poverty. Often, they had to find food even in garbage cans. Agime Sulejmani tries to secure an income by working in agriculture, the residents' greenhouses, or any other alternative he can find in the village of Kosma?. As the boy grew up, his illness progressed, turning him into an abuser of his mother. The mother understands and tolerates. She has only one wish: not to be separated from her son.

'He has big nerves, he breaks the doors, I have nothing to do but the needle. Violence, I have a son, I will bear it....He beats me until I almost feel like I'm going to die. It's a hard life, but it's worse than when my son beats you, but he doesn't have it for fun, nor does he have it because he doesn't there is something in my head' said Agime Sulejmani, the mother.

His crises are unbearable for anyone. The only way to calm him down is to send him to the emergency room and do a needle which is costly and puts a strain on Agime's budget.

I took him to Shkoder to get the needle to calm him down, no one can handle him, he has big nerves. The needle that I give costs 40 thousand lek, to calm down, twice a month, says Agime Sulejmani, the mother.

 "When they don't receive therapy at all, the situation is very difficult and if we say can they stay in the family, the question is as if you have another choice, no matter what they do they will keep them there because there is no residential center or system or institution that can take care of them' said the psychologist, Denata Toçe

Agime Sulejmani has decided to endure the boy's violence, but according to information, there are several cases where patients with similar diagnoses are kept in difficult conditions, even isolating them with chains. This solution is to avoid tragedies from violence against family members or fellow villagers. In our country, there are no institutions that can take care of this category, multifunctional or day care centers.

The windows are broken by seizures, the miserable condition of the 8-year-old with three diagnoses

Here, we are in the village of Barbullush where we met Navisa, the 8-year-old diagnosed with active epilepsy, paraplegia and psychomotor retardation. Moreover, she cannot speak nor hear.

 "The girl was 3 months old when I realized it, she had her first seizures, she was foaming at the mouth and from that moment until now, when she is 8 years old, she has not spoken or reacted to anything," said Nadire Qerreti, the mother.

Family members communicate with him with difficulty using sign language. This makes it difficult to follow a therapy since there is no communication, and for this it is necessary to place a hearing aid, for which the family members do not have the financial means.

"We check to see how it is, but the situation is singular, it has not changed. We barely make ends meet, when we go to Shkodër I have to leave the children in the neighborhood, does anyone take care of them or not, the husband doesn't have a job anymore, the mother-in-law doesn't watch, we barely get by," said Nadire Qerreti, the mother.

The family consists of 6 members, 3 children, grandmother and parents. The grandmother is blind and in these conditions it is impossible to be a help in taking care of Navisa. There are moments when Navisa becomes violent.

"There are moments when it's good, there are moments when the epicrisa takes over, it stays frozen and foams at the mouth for up to two days," said Nadire Qerreti, the mother.

From the last crisis that passed, Navisa broke the window panes of two bedrooms. Because of his young age, the mother can control him, but in the future it will be more difficult. The family's efforts are focused on her because of the multiple problems the little one is facing. Fitting a hearing aid would facilitate communication. This would allow the doctors to work to improve her condition a little.