How war is testing families raising children with disabilities?

Air raid sirens in the middle of the night, shelling, harsh winters, power cuts lasting hours or even days, and interruptions to water and heating supplies have become part of everyday life for Ukrainians. However, among the millions, there are families for whom these trials have a much deeper and more painful dimension.

We are talking about mothers raising children with disabilities and adults with disabilities. Even in peacetime, their daily routine requires extraordinary effort: rehabilitation, medical care, constant attention, and the struggle for development and a dignified future. The war has greatly increased this burden.

Darkness in the stairwells, cold in the apartments, non-functioning elevators in high-rise buildings, the inability to quickly reach shelter, exhaustion and fear. All of this creates a new reality in which even simple everyday things become daily challenges.

Here are just a few stories from the lives of members of the Litay community.

“A life that cannot be put on hold”

Natalia is 45 years old. Her daughter Yulia is 19. Formally, she is already an adult, but due to developmental issues, she still needs constant attention.

Yulia moves with assistance and has a complex diagnosis, which has been compounded by new health problems over the years. She speaks unclearly but has a good memory and unconventional thinking. Natalia calls herself an active mother — for 19 years, she has been looking for opportunities to improve her daughter's condition and support her development.

The war has brought new difficulties. Yulia sleeps very soundly and has a hard time waking up at night during air raid alerts. If such nights are repeated, the girl starts screaming from stress.

Another challenge is power outages. For several weeks now, Natalia and her daughter have been forced to climb to the eighth floor on foot. This is especially difficult after classes at the rehabilitation center.

The woman admits that she is increasingly afraid for her daughter's future. Once she reaches adulthood, access to rehabilitation services will be significantly reduced, as most centers only work with children.

Natalia maintains her resilience through sports, particularly Zumba, which she discovered eight months ago. She also finds balance and inspiration in beadwork, reading and the support of her family.

“We fight for every little result.”

Khristina is 39 years old and raises two children with disabilities.

Her four-year-old daughter Milana has been diagnosed with autism and mental and speech development delays. The family is systematically engaged in rehabilitation: neuropsychologist, speech therapist, psychologist and physical therapy.

The girl is very emotional, has fears, finds it difficult to cope with waiting, and gets tired quickly during classes. Air raid sirens cause her severe anxiety and power outages are an additional source of stress for Milana.

Her younger son, Sasha, is two years old. He underwent complex heart surgery immediately after birth. Due to postoperative complications, the boy spent a long time in the hospital and lost weight. Khristina recalls feeding her son through tubes, running to the intensive care unit to the sound of shelling.

The family lives on the 21st floor, which makes evacuation during alerts impossible. During power outages, the family is saved by a portable stove, which allows them to cook food for the children.

Khristina says that she is holding on thanks to her children and the support of her husband and mother. Her biggest dream is peace and a safe future for her family.

“Single motherhood and double responsibility”

Victoria is raising her 16-year-old son Tymofiy on her own. The boy has autism, he is sensitive, emotional and finds it difficult to cope with changes in his familiar environment. The war has significantly increased his psychological stress.

According to his mother, many difficult situations arise in everyday life. When playing, Tymofiy cannot control his movements. Air raid sirens cause him great fear, he comes to his mother at night, his body trembling.

Victoria openly says that her husband could not withstand the trials and left the family.

"In the conditions of war, there are many more problems: overcoming fear, worrying about myself and my child when the lights go out. He gets angry that his phone is out of battery and I am unable to provide him with chargers.

My dream is to see Tymofiy cope on his own without my care. Today, I live and hold on because my boy needs me," Victoria shares.

“Losing her home and searching for a new life”

Marina and her family were forced to leave Popasna. In her hometown, she had access to sports halls, a church, a rehabilitation center and development opportunities for children with special needs.

After moving to Kryvyi Rih, most activities became available only online, provided only if there was a stable power supply. Mobile internet is quickly used up for learning.

Marina admits that creativity and her pets help her cope. She dreams of having her own home and an accessible environment for people who use wheelchairs.

“Not heroes, but parents: a story of love without pause”

"My name is Victoria. I am 34 years old. My daughter Emilia is almost 8 years old. She is a special, creative, inquisitive, “slightly” stubborn girl who loves to ask a lot of questions that I cannot always answer right away. She knows how to see beauty in small things, loves to collect everything and inspires me with her strength and stubbornness.

Every night before bed, we pray and in the morning, we give thanks. Air raid sirens add to the anxiety, especially at night when we have to quickly get ready and go down to the shelter. Lately, my daughter has been more nervous and anxious. Power outages make it harder to take care of her and disrupt our routine. The constant danger is emotionally draining.

Today, I am supported by my loved ones, a few true friends and my belief that everything has meaning. My daughter's creativity also helps (when she draws, invents something, participates in competitions), I see her inner world and understand what I am fighting for. Moral support is a lifesaver, when people don't judge, but listen. And also concrete help from caring people and public organizations.

I lack a sense of stability, time for myself, simple relaxation without worry. As a mother, I lack confidence in the future.

I hold on for the sake of my daughter's future and her dreams.

I dream that she will be as healthy as possible, that she will live a dignified and happy life in a peaceful country.

We are just parents who do everything we can every day. We need support, not pity.

Today, I live and hold on because my daughter needs me and believes in me.”

“Love that never fades”

Olga is 28. Her son Mark is two years old.

“He is a beautiful, smart, cheerful boy. The best in the world. My sunshine, my universe,” says Olga.

Mark is still very young, barely talking, needing diapers, formula, porridge and baby food.

Olga lives in conditions where electricity and heat can disappear for several hours, sometimes for the whole day. After shelling, the heating goes out and daily life has to be organized according to a schedule. Food is cooked on a small gas stove because the electric stove is broken. There is no hot water supply in the city and there is no boiler, so water has to be heated in basins.

“I don't always know how to do everything at once,” she admits. Sometimes her grandmother helps, but Olga bears most of the burden herself.

Air raid sirens add to the fear and tension. She fears most for her son. At such moments, they go into the hallway and even a few minutes seem like an eternity. Constant sleep deprivation and anxiety are exhausting.

Olga's family helps her cope, especially little Mark. She gratefully recalls the support she has received: tiles, flashlights, power banks and water from caring people and organizations.

To recover even a little, Olga needs simple pleasures: meeting friends, going to a cafe or cinema and a small change of scenery.

“It's like a breath of fresh air. Then I feel like not only a mother, but also a woman, a human being.”

Her biggest dream is peace and victory, so that her son can grow up in a country without fear.

“Today, I live and hold on because I have my family and Mark. I want him to never experience what we are going through.”

Strength that should not be the only support.

These women’s stories are different, but they are united by a responsibility that cannot be turned off even when the city is plunged into darkness. They climb stairs with their children, cook meals on camping stoves, calm their children during shelling and overcome fatigue and fear.

At the same time, they continue to find strength in creativity, sports, family support and the simple realization that their children need them every day.

The founder of the NGO “Litay” emphasizes that such families need systematic assistance: access to rehabilitation services after the age of 18, psychosocial support, safe living conditions, and the development of inclusive services. Mothers are extremely strong; they do everything possible and sometimes even the impossible, for their children, forgetting about themselves. The child comes first. And very often, years of sacrifice take away their health, strength and resources.

Our NGO “Litay” is always there, ready to support and help families in our community, understanding that they are currently facing the most difficult times.