Life with Down syndrome in the midst of conflict

DNIPRO (UKRAINE), 26 (By Anna Lukianenko and Abigajla Conway, World Vision Ukraine)

In times of peace, raising a child with special needs is an immense challenge. In the midst of the chaos of war, it becomes a daunting task. For Olga, originally from the occupied city of Lisychansk, in the Ukrainian region of Lugansk, and her son Artem, 14 years old and with Down syndrome, their journey has been a path of survival, resistance and lasting love.

Since 2022, Olga and Artem have been living in a shelter in Dnipro, fleeing the dangerous conditions of their hometown. “When the first shelling started, Artem was running around the room,” Olga recalls. “Then he would get under the blanket and fall asleep. It’s a protective reaction of his psyche.”

Adapting to the constant alarms and explosions has become their new normal. “When there is a lot of noise, I calm him down.” In Dnipro, everyday reality includes periodic alarms. Recently, a drone was shot down just a five-minute walk from their shelter, causing Artem to run to his mother for comfort.

Despite the circumstances, Artem insists that he is not afraid. Proudly showing his biceps, he declares: “I am strong! Only the war… and the falling missiles…” he adds after a moment of reflection.

The journey to Dnipro was fraught with danger. “When I realized that we were not safe at home, we left. Thank God there was a car. The road was calm, but we saw the bodies of our boys,” Olga says. They moved several times before settling in Dnipro; First they stayed with Olga’s mother in a village, and then in Zaporizhzhia. “Only when I got here did I realize that this would be our home.”

Olga’s family, like many others, is now divided. Her husband stayed in Lysychansk, and they have not seen each other since. She has two older children: one lives in Kharkov, and the other managed to go to Spain with his family. During the war, Olga also lost her sick mother.

“Of course, it’s difficult when so many different people are forced to share a common space,” says Olga. At first, they shared a room with four elderly people. “You can imagine how difficult it was, given Artem’s particularities.” Now they have a separate small room, neatly organized and with the scent of her perfume filling the air. “When we left, I took all my perfumes! I can’t live without them,” she laughs. Each bottle evokes a memory, and Artem delights in its aromas.

The room is filled with books, a makeshift library to make up for the one Olga had to leave behind. Cards with letters and numbers hang from a curtain separating the front door and the bed, tools for Artem’s learning. Olga shows a voluminous book – Artem’s medical history. “Searching for information can take at least 30 minutes when someone asks for something specific,” he explains.

OVERCOME THE CHALLENGES: HEALTH, EDUCATION AND HOPE

Artem’s Down syndrome is complicated by a heart condition that makes even small physical efforts difficult. He spends most of his time at home, avoiding interaction with other children who can be rude and not very tolerant. “For more than five years I took him to a speech therapist to learn to speak. He often repeats my sentences, so I have to express myself carefully.”

The lack of special schools in the war-torn region adds to their difficulties. “We went to one in Lysychansk, but it’s closed now, of course. He really liked it; it offered him some socialization.”

The mobile team, led by the Ukrainian Public Health Foundation, World Vision’s local partner, and supported through the BHA-funded project, provides invaluable support, especially with art therapy sessions that allow Artem to express himself creatively. “We draw and sculpt with plasticine,” says Olga.

As we tour the shelter, Artem proudly shows us his artwork and points out a ruined building hit by a rocket, a grim reminder of the war that shapes his perception of the world. In the hallway, he affectionately caresses a kitten, his love for animals evident. “He loves animals; it’s a kind of therapy for him,” explains Olga.

HOPE IN THE FUTURE

Olga and Artem are waiting for heart surgery. “The doctors in Dnipro are more qualified than those in Lysychansk. If everything goes well, they will operate on him as soon as possible,” says Olga, her voice tinged with hope and anxiety.

Despite not being able to work due to her caregiving obligations, Olga manages with the support and help of the State. “We’re not starving, don’t worry,” he says. However, the economic pressure is evident, as life-saving medications are expensive and necessary.

“I can’t imagine life without him. If I could choose, I wouldn’t change anything. If I was offered the most wonderful life in abundance, I would choose the one I have. The love that Artem gives me is the most sincere,” he says smiling.

Despite the war and daily struggles, Olga feels grateful for what she has and finds happiness in small joys. Every mobile team visit is a celebration. “They are like a breath of fresh air. It’s like entering the world of Narnia,” says Olga, her eyes shining. In the yard, Artem picks up a dandelion and blows on it, laughing. When asked what he has wished for, he answers dreamily: “I have wished for PEACE.”