This is the story about Iryna from the town of Shumsk. The girl has a complex illness. Her relatives surround her with love and strongly believe in a better future.
The large Dyachuk family lives in the town of Shumsk in the Kremenets district. The parents named each of their five babies at birth as a blessing from God and accepted them with gratitude. The Dyachuks named their fourth daughter Irynka. Until she was six months old, she grew like the rest of the children, but then she fell ill and began to have seizures.
“It was so scary. I held her several times as if she were dead. While you call an ambulance, while they are on their way, you look at her and see that she is not alive, but you still have a spark of hope that the child will live,” recalls her mother Lyudmila.
A few months later, the child developed pneumonia, which was treated in medical institutions for a year. At the age of two, she was admitted to a hospital in Ternopil because of prolonged seizures. The doctors were finally able to stop them with medication, but not immediately. The child returned home with part of her body paralyzed.
According to Lyudmila, before this incident, Iryna had learned to say a few words: she could say “baba” and “vava,” and when asked what their dog’s name was, she replied, “Jack.” After treatment, Iryna stopped using the words she had already learned. The way she interacted with the world gradually changed.
The girl is now 12 years old. She has complex intellectual disabilities accompanied by significant impairments in speech, motor coordination, and cognitive functions. She does not speak, but has learned to walk a little on her own and pays attention to people and objects that are close to her or interesting to her.
Human love supports, but callousness hurts
As she grew up, Iryna began to change and achieve small victories, which are a great joy for the family: “When Iryna started school at the age of eight, teachers began to visit her regularly. At first, the child was somewhere in her own world, but since the age of eleven, she has been catching the glances of other people, and if she hears a sharp sound, she may flinch and pull her leg away when tickled. I see progress: I call out to her, ‘Let’s go eat,’ and she comes. When she goes to bed, she can swing her leg over, whereas before she could only sleep curled up in a ball. Every new reaction she has to something brings me such joy,” the woman shares.
The girl is also learning new skills when it comes to eating. Iryna needs help when she eats, and most of her food is pureed in a blender. But this year, she started sucking on orange pieces by herself. She really likes bananas, so her mom always has them at home. Recently, when the tangerine season started, her mom started giving them to her too.
Teachers help the child develop fine motor skills, visual and auditory perception. Even when she did not respond to people, they continued anyway. Now they see that their work is bearing fruit. For example, when they show her colors, they see that she likes bright ones: orange and red. The girl also likes large toys because they are easier to pick up, but they mainly play with small ones to develop her movements.
Iryna expresses her emotions in her own way. She does not cry or laugh out loud, but she can easily smile or hold eye contact. Her family recognizes these signals well and understands when she is comfortable.
Teachers often say that the girl is very sweet. Among Iryna’s favorite teachers is Antonina Vitaliivna.
“It was my daughter’s birthday recently, and her teacher brought her a gift. Although the child does not understand the significance of events in the same way as other children, she is happy to see her guest. She looks into people’s eyes, smiles, and I can see that she feels warm emotions. She reaches out to hug people and tries to make sounds. The teacher says she loves her and is also happy about our successes,” says Lyudmila.
Such people are a great support for the daughter and her mother. However, over the years of Iryna’s treatment, the family has often encountered indifference and callousness. They heard all sorts of things from doctors. Sometimes they were told straight to their faces: “Children like her don’t live long.” The woman learned to “fight back” verbally and respond that she had hope and faith in a good future for her child.
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“One day, one of my daughters heard that Iryna wouldn’t live long. She cried and kept asking if it was true. I told her that we will all die someday, but everyone has their own time, and no one knows how long that will be.”
Now the family is being treated by another doctor who has a more compassionate heart. She is helping the girl through the difficult period of adolescence, when her hormonal balance is changing and provoking another series of seizures. According to her mother, the doctor is always available when something urgent is needed and provides support. This is a great help to them, not only medically but also emotionally.
Iryna’s world consists of familiar routes and safe places
Until the age of eight, Iryna could hardly stay outside. She would only last a few minutes outside before her seizures began. Even changing rooms would affect her condition. Now, although the seizures have not disappeared, they occur less frequently and the girl can go for walks. Fortunately, over time, the child was able to get back on her feet and now walks a little on her own to strengthen her muscles. When she runs out of strength, she stops or sits down. Someone is always with her at this time. They don’t usually go far: they mostly walk in the yard or on their street, and sometimes they go to nearby places that they love. One of these is the area near the local reservoir.
The family rarely asks for help, even though things have become a little harder for them over the past four years since Iryna’s father died of cancer. They try to cope on their own: they cultivate their garden and keep chickens and pigs so that they have their own food. The only thing they need for Iryna is diapers. Recently, they also needed a wheelchair. The public association “League of the Strong” provided it to the family. This is the second time they have supported the child: in previous years, they gave her a tablet for her studies.
The family also contacted social services, but they were told that Iryna did not meet the criteria for receiving a wheelchair.
The Dyachuk family does not have a car, so the wheelchair is currently their only option. The child sits in it and they go out together to run errands or for a walk.
“There is a pine forest and a lake not far from our house. We go there to breathe fresh air and walk by the lake. The more we go, the better our daughter gets to know everything around her and looks around a lot. We are taking small steps and hope to get out of this situation someday,” adds Lyudmila.
“There is a pine forest and a lake not far from our house. We go there to breathe fresh air and walk by the lake. The more we go, the better our daughter gets to know everything around her and looks around a lot. We are taking small steps and hope to get out of this situation someday,” adds Lyudmila.
Sometimes her brothers and sisters take her with them on walks around the neighborhood. There are plenty of children in the neighboring yards, so other children run up to Iryna during these walks to say hello and offer her some treats. They treat her kindly, some with curiosity.
The relatives also provide support to the family. When the mother needs to go somewhere on business, someone always visits the children. Sometimes they have several visitors a day, because everyone is concerned.
Iryna’s world consists of familiar places, regular support, and people who are there for her every day. It is filled with unconditional love from her loved ones and those who care about her. This love warms her home and fills it with hope for a better tomorrow.
This material was created with the financial support of the German Federal Foreign Office (GFFO), CBM, and the European Disability Forum. The views expressed in this material are those of the authors and cannot be considered the official opinion of the financial partner and the European Disability Forum.
Author: Tetiana Pihurska