"Dreaming to Live": The story of brave mothers and the struggle for the future of children with cerebral palsy in Ukraine during the war

Irina Popovskaya, Head of the charity organisation "I Dream to Live"

"Dream to Live" was founded as a response to thousands of appeals from families in difficult circumstances with minimal state support. We could not remain indifferent.

We specialise in helping children diagnosed with cerebral palsy. Children with this diagnosis need ongoing support. Each child has different challenges: some can walk on their own and some cannot even sit up.

Cerebral palsy is a consequence of trauma, not just a disease. They can be reduced or completely eliminated. Many children with cerebral palsy will be able to walk and even attend mainstream schools, but this requires ongoing intensive rehabilitation.

In everyday life, children and their parents face many challenges: the negative attitude of society, the lack of social infrastructure (ramps and lifts for wheelchair users) and the need for large financial outlays only exacerbate an already difficult situation.

We aim to help such children realise their potential and become full members of society.

In 2021, our foundation initiated the annual Mama Special award, the copyright for which we have registered.

This is more than just an event. This is the moment when 25 brave women raising children with disabilities started to believe in themselves, smile and be happy again. It is for them and for the whole Ukrainian society that our Foundation continues its work. Therefore, despite all the obstacles, in 2023 we are holding this event again in honour of these brave women! This is important to support their psycho-emotional state and their children, as well as to show the world that there is not only war in Ukraine, but also women and children with disabilities who need help and support. 15 nominees and their children will become stars of this event, where they will be surrounded by positivity, songs from Ukrainian stars, they will be dressed in evening dresses from designer, they will receive gifts from partners for themselves and their children, they will be written about in the information space and printed in magazines, and photographers will ask them to pose for photos and videos.

Victoria Chernenko, 47, mum of three sons, the youngest has a disability

I have three sons, the youngest of whom, Mark, 9 years old, has a disability from childhood, group 1. He has an early organic lesion of the CNS, RAS.

on 23 February 2022 we were in Odessa. Our doctor from Tbilisi came to visit us and we also visited an osteopath. This day was very full.

We were glad that we had time for everything and returned home to Kherson. But the next morning the war started.

I woke up at 5 a.m. from the call of a friend shouting into the receiver. Everything happened as in a dream, until a loud explosion outside the window brought me to reality. We quickly packed our things, got in the car and left in the direction of Nikolaev. We didn't know where we were going, and our anxiety was transmitted to the constantly crying Mark and our cat, who rarely travelled by car and therefore screamed.

Just as we left the city there was a loud explosion - Kherson airport was blown up in front of our eyes. So we decided to go back and hide.

We spent the whole day at my husband's work. This day, as well as our departure from the occupation, I remember by minutes. What shocked me the most was the flock of Russian helicopters flying over us at low altitude and the landing of paratroopers at the airport in Chernobaivka. In the evening we decided to go back to the flat because the children were hungry and we didn't know where we would be safer. Then we were on duty between the basement and the flat. We left the house for the first time after 40 days, when all the food supplies ran out. We lived in the occupation for four and a half months.

on the 7th of June we decided to leave. Mark had lost 7kg, was under stress, and we had nowhere else to pull. We reached Kiev in two days.

There were 28 enemy checkpoints on our way and we spent the first night in Zaporozhye in a kindergarten on the floor on baby mattresses, but we were very happy.

Zaporozhye received us very warmly and we did not expect such support. We are grateful to all the volunteers and organisers of the evacuation camp located in Zaporozhye Epicentre.

We have been in Kiev for a year now and we are trying to adapt to the new conditions. In September last year Mark went to the first class on an individual form of education.

We undergo different types of rehabilitation, attend developmental classes at the centre "Kiddom". This centre is aimed at supporting children with mental disabilities. The classes are partly funded by charitable organisations.

After I was diagnosed, I, like all mothers of children with disabilities, completely changed my life. I immersed myself in medicine, took a lot of medical courses, courses in ABA therapy, nutritional therapy. Anything that could improve my child's health in any way.

I would like to see more state-run child development centres opened, because the affordability of private classes is prohibitive. It is very difficult when there is only one person working in the family to provide additional activities for a child, especially when there is a lot of money needed each month for medical treatment. Unfortunately, there is no way to do without outside help.

Elena Demir, 47 years old

I have a son, David, who has had a disability since childhood. I also have a disability because of my medical condition.

We met the war in shock, we could not believe that such a thing could happen in our time. The day after the invasion began, we travelled to a village in the Chernigov region where we hoped to find safety.

We didn't know that we would spend over a month there under harsh occupation, with no medicine, no medical care, under shelling, held captive by snipers, next to Russian tanks and military, with almost no food, communication, light or gas.

David and I invented a game: if we recite the Lord's Prayer 100 times, God will definitely protect us. And David, who could not remember even a small verse before, repeated the prayer over and over again. God saved us, even though we had little hope anymore. David continues to recite the prayer in difficult moments, and it makes me both happy and sad at the same time.

After the de-occupation, we returned to Kiev. The doctors recommended that we find a quiet place for David, so we tried to find a house in the countryside in Poland, but it was unsuccessful.

Instead, one of the volunteers offered us a hostel in Germany, where we lived for 3 months. However, due to the complexity of the process of confirming the diagnosis in Germany, we decided to return to Ukraine.

Now David is undergoing different types of rehabilitation, attending masterclasses and participating in recreational activities. We would like to see more education in the mental disability community, as well as raising the qualification of specialists in this field. We would like our children not to be pushed out of society after reaching adulthood, but to be able to adapt to life, education and labour.

Nadezhda Tsimbalyuk, 37 years old

I am the mother of nine-year-old Diana, who has a disability "subgroup A". She has been diagnosed with cerebral palsy, spastic diplegia, and epileptic syndrome, which has been in remission without medication for five years.

We met the war in shock and confusion, like many others.

We woke up to the rumble of explosions and then our friends started calling. My husband went to pick up my sister from another neighbourhood, and Diane and I packed the essentials.

In the evening we decided to go to our home village near Kiev. But, as it turned out later, it was not the best decision. Our village was between two lines of fire, and we found ourselves under firefights every day for a fortnight. The explosions were so strong that the walls in our house and bed shook. The bridge in the village was blown up, aeroplanes and helicopters flew low over our house, and tanks and military vehicles were constantly driving through the streets.

When there were brief breaks in the fighting, we walked around the house because Diana needed to move around a bit to keep her movement skills up. But after two weeks, we decided to move on because our nervous system couldn't take the strain. So we took my parents and went to my aunt in Vinnitsa region. We are very grateful to her that she took us all (6 people).

In Vinnitsa region we formalised the status of internally displaced persons in order to receive at least some support from the state. We helped our military, donated money, because many of our relatives and acquaintances went to war. We lived in Vinnitsa region for two months. We did not want to go abroad.

After that we withdrew our IDP status and in May we returned to Kyiv. The main reason for the return was the struggle for Diana's health.

Without rehabilitation, she could have missed movement skills, because it was with the beginning of the war that she started to grow rapidly. We have different means of home rehabilitation at home, so we found a new rehabilitator and continued with Diana's classes and rehabilitated her condition.

The war certainly changed the lives of all of us. It opened our eyes to the true face of people, our friends and acquaintances. Sometimes strangers who have never seen you but know you from social networks show more care for you and your child than your family and friends.

We want society not just to talk about understanding our situation, but to actually help people with disabilities. We want people to be aware, to teach their children to treat people with disabilities correctly. So that our children are not afraid of other children with disabilities. We don't need pity, we need support and socialisation. Every special child will be happy to be socialised, not locked up at home because they have limited mobility.

We would like to see more specialised playgrounds and sports areas. So that inclusion is not just a word, but an actual action. Many principals, carers and teachers are not prepared and do not know how to work with special children. Perhaps free seminars for adults should be organised, where specialists would give advice, and joint play activities should be organised for special and ordinary children, so that children learn to help and support each other instead of insulting each other.

Mobility aids - prams, wheelchairs, chairs, orthoses - are also an important issue. Foreign models are very expensive, and ours are not so practical and break quickly.

None of us chose special motherhood. But our children change the world. They teach us to see with our hearts, to enjoy life, to fight and prove that anything is possible if you keep your hands up. Movement is the meaning of life, and we will do our best to give that movement to our daughter. Nothing is impossible. We will definitely win. It just takes us more time and effort than other people. We are only moving forward.

After the war in all countries, unfortunately, there will be many adults and children with disabilities. And society needs to learn to be kinder to such people. We believe that our country will become European not only in words.

Kateryna Samodelko, 45 years old

I am a mum of an amazing little girl. My daughter Olya had severe cerebral palsy. She had the fate to live only 13.5 years. However, despite all the trials, this time was filled with incredible happiness and boundless love.

When the war started, Olya and I were on holiday in Cyprus. We planned to return to Ukraine on the 26th of February 2022, but the planes did not leave. We spent three more weeks in Cyprus in a state of confusion and anxiety for our relatives and our Ukraine. Unfortunately, not everyone on this island supports our country, we met different people.

Then my acquaintance invited us to Germany. At that moment I had already lost contact with my mum who lived in Buchanskiy district.

I prayed every day to hear her voice again. Mum spent more than a month in the occupation without electricity, gas and water.

In one year Olya and I changed three places of residence in Germany. We managed to meet many kind people. We planned to return to Ukraine in the spring of 2023 to undergo rehabilitation, and perhaps to stay here forever. But on 10 March 2023 Olya passed away. It took me a month and a half to draw up all the documents for the removal of ashes. And at the end of April this year we were already at home.

I buried Olya in Ukraine and stayed here.

My Olya is the biggest gift from God, she taught me a lot. Now I am learning to live again. I see the meaning of my future life in charity. I decided to help children who became orphans because of Russian aggression, as well as children with disabilities.

Olga Gumen, 36 years old

I have a 13 year old son Maxim who was diagnosed with a subgroup A disability (epilepsy, RAS, paresis, condition after successful brain surgery performed in Germany in 2013). I was an active volunteer, but then went through a long period of burnout....

I worked on myself with psychologists and psychotherapists for many years.

We met the war in a state of panic and fear. We packed anxious rucksacks ... My mum and Maksim were evacuated to Poland for 3 months, my husband immediately went to volunteer at the military recruitment centre (as he did in 2014), and my eldest son and I started volunteering at a shelter for our displaced people. Last autumn we founded the NGO "Hedgehog", which unites families raising children with disabilities of subgroup "A" (Ternopil city and migrants) with the aim of rights protection, humanitarian mission, psychological assistance. Now our goal is to provide our vulnerable group with the most necessary things (food, hygiene) and to move towards the establishment of a Day Care Centre for our children. We strive for inclusiveness and barrier-free. But we realise that the integration stage cannot be missed.

Elena Timchenko, 42 years old

I have a 16-year-old daughter Elizaveta, who has a disability of subgroup "A".

We met the war with tears in our eyes.

My husband and I started volunteering in Akademgorodok in Kiev, as our house is located at the exit from Kiev, and constantly someone was coming or going because it was very loud and scary.

on the 4th of March we left as a family to Poland as Lisa was very scared. We stayed in Okuniniec with friends and helped them at a hotel that was taking in refugees. All this time we dreamed of coming home and in May we did. We are working for Victory! Now my goal is to set up a fund for mothers of special children. I would like to see more benefits from the government and charities for children 18+.

Elizaveta Golub, 26 years old

I have an 8-year-old son Maxim, who has a group 1 disability of subgroup "A".

We met the war in a state of terror. The day before the full-scale invasion we were discharged from hospital after being treated for coronavirus. I am bringing up my son on my own and I was very scared, I didn't realise what to do. Panic reigned, it was impossible to leave as I could no longer carry my son, who does not walk. We did not think about going abroad as we have only one close person - my grandmother and we could not leave her. on the 9th of March we managed to come to her, even further away from Kiev.

In the first months, the state and the village council helped with everything, from nappies to food. We formalised the status of resettled people.

But since May 2022 we felt that everything is back to normal. Now we have to think about everything on our own, make it up as usual. I would like to see more support from the state, to calmly receive what belongs to us by law. I would also like to understand from others that we are mothers and our children are the same children who have the right to happiness in society and to live, not to survive. And not to be fighters for justice.

Valentina Belotskaya, 49 years old

I have a 17-year-old daughter, Daria, who is disabled from childhood, subgroup A.

We met the war at home and it was very scary to realise that this could happen. on 9 March we left for Poland, and then with a group of swimming children and a coach we found refuge in France. There we continued our training, stayed there for half a year, but returned home in the autumn.

We couldn't be away from home for so long, our mum, husband, son were waiting for us here - everything that is native to us.

Our life is here, not somewhere else. Every day we lived like a dream, no matter how good it was out there. We helped acquaintances who were fighting as best we could, and we continue to donate even now. We received no help in Ukraine except for food packages.

My wish is for people with disabilities to be able to move around the city independently, especially those who use carts. This applies to transport, pavements, roads, entrances, educational institutions. We have many acquaintances with wheelchair users who stayed abroad only because they can travel independently, freely move by metro, train, city transport.

Natalia Prikhodko, 47 years old

I have a 12-year-old daughter, Anastasia, who has cerebral palsy subgroup A.

Three days before the war started, we sent Anastasia to Truskavets for rehabilitation. When we learnt about the war, we were overcome with shock, tears and could not believe that such a thing could happen. We did not receive any help from the state and did not go abroad.

We planned to be in Truskavets for only two weeks, so we took with us only the most necessary things. Everything else was left at home in Kiev.

We rented accommodation and stayed in Truskavets for two and a half months, and at the beginning of May we returned home. We really wanted to come home.
I wish there were more free centres where children with special needs could be treated, educated and rehabilitated.

Ekaterina Chikish, 34 years old

I have an 11-year-old daughter, Tatiana, who has a subgroup A disability.

We met the war in shock, fear, and could not believe that it was really happening.

The day after the invasion, we left for my sister's house in the Kiev region. After a week there, we decided to continue our trip to the Vinnitsa region, where our acquaintances were waiting for us.

Every day we lived like it was our last: fear for our children, uncertainty about the future overwhelmed our thoughts.

My eldest daughter, who has a disability, did not fully understand what was happening, but our anxiety greatly affected her. I saw for the first time a complete lack of understanding in her eyes as to why we were going to bed with our clothes on and packed. We really wanted to come home.

What we would like from the state is more help for our children. What the state provides often has to be knocked out the hard way, although we are entitled to it. During this period we were helped more by various charity funds and volunteer organisations, for which we are very grateful.

Maria Fetisova, 41 years old

I have a group 2 disability and am raising an 11-year-old son who also has a disability.

I was at home when the war started, but I spent the next month almost continuously at work. I work in a rehabilitation centre under the auspices of a charity and we turned it into a temporary shelter, helping evacuees. Then we had to go abroad as my son needed surgery and our doctors were at war. We spent 1.5 months in Italy, but unfortunately they could not help us there and we returned home.

With the outbreak of war it became more difficult to perform surgeries on my son. Every operation is a fight for life, and here we are under rocket fire.

My dream is that our state should not separate children with disabilities, but adapt life to such people. So that there would be qualified specialists working with children in kindergartens and schools, so that such children could find a profession and a job.
I do my best to help mothers and children with disabilities, because life is interesting when you don't live from one day to the next, but do something meaningful.

I am bringing up two children with special educational needs. My daughter Olya is 14 years old and my son Andrey is 8 years old (subgroup A).

In February 2022, when we started our regular rehabilitation in Truskavets, we could not even imagine that the war would start. We found out on 24 February when our relatives reported that tanks had entered our Sumy region and were shelling everything in their path. It was shocking, but we had to pull ourselves together and go on with our lives. Fortunately, we successfully completed our rehabilitation course.

As our area was occupied and there was no safe way home, we left for Vinnitsa to stay with our friends, where we stayed for another two weeks.

As soon as it was possible to return home, we decided to do it and on 23 March we were already home. Although many people tried to leave for a safer place, it was better for us to be home.

The war had changed our lives and values. But despite all the challenges we face every day, my goal remains the same - to help my children achieve the best possible educational and physical development. So we keep working and moving forward.

The help from the state has remained the same as before the war: payment for one rehabilitation course per year and two pairs of orthopaedic shoes per year. We received more help from various volunteer organisations, for which we are very grateful.

I would like our state and society to create a fair, equal and supportive environment for children with disabilities and their families:
Developing Inclusive Education Society and the state can work towards an inclusive education system that enables children with disabilities to receive a quality education with other children. This includes access to specialised support, appropriate learning environments and teaching resources.

• Accessibility: It is important to ensure physical and social accessibility for children with disabilities. This means building infrastructure that takes their needs into account, providing access to transport, health services and other necessary resources.
• Medical care and rehabilitation: Society and the state can provide accessible and quality medical care for children with disabilities, as well as rehabilitation services to help them develop and live fulfilling lives.
• Social support: It is important to provide families of children with disabilities with social support, including financial assistance, counselling services, psychological support and other resources to help them overcome the challenges they will face.
• Equalopportunities: The state and society must work to ensure equal opportunities for children with disabilities. This means challenging stereotypes, discrimination and social exclusion, and ensuring equal access to jobs, cultural activities and other areas of life.

These changes need the joint efforts of society, government, civil society organisations and other stakeholders.

Ludmila Kulinko, 48 years old

I am raising my granddaughter Milana who is 7 years old. Milana has shunt-dependent hydrocephalus and she is classified as "subgroup A". She also has orphan status.

We found ourselves under occupation on the second day of the war. It was a shock, we could not believe that this could happen.

We were under occupation for a month, it was terrible. the occupiers went door-to-door looking for "Nazis", intimidated us, clicked the bolts of automatic rifles in front of us. Then, at the end of March, the occupiers fled, shooting at houses. In early April, our Ukrainian Armed Forces finally liberated us.

We did not receive any assistance from the state, except for humanitarian aid. I would like us to have the opportunity to undergo rehabilitation under Resolution #309 several times a year, not just once.

Alla Bevzyuk, 40 years old

I am a mother of three children. My eldest son Dima has a disability of the first group, subgroup A, and uses a wheelchair. I am the founder and president of a non-governmental organisation that helps people with disabilities, internally displaced persons, lonely elderly people, etc. My husband joined the Ukrainian Armed Forces right after the war started and is now on the front line.

I thought for a long time whether I should leave Kiev, but I decided to stay. I put my children and my grandmother in a safe place and started to supply everyone who was with me with everything they needed.

I searched for blankets, medicines, food, hygiene products for those who asked for help. I did all this with my own car, I was both a driver and a loader, I worked through fear and sleep deprivation, traffic jams and roadblocks, oncoming traffic, under shelling, through excitement and tears. But I couldn't just sit and watch everything fall apart. It seemed then that the only way not to go mad was to drive, to drive, to support, to listen, to help.

Now the flow of humanitarian aid from sponsors has greatly reduced, people have started travelling or going out to work, they have managed on their own. But there are some families who still need and receive help.

My driving force was to go, search, find. It was provoked by my daughter's request to buy candy in ATB, which was not there (at that time almost all shop shelves were empty). Then I thought, "What kind of mother am I if I can't even provide my child with candy!" I pulled all the levers, all the introductions, all the bundles, and sprang into action. I slept in a storage unit and travelled from the left bank to the right bank, and there could be several such trips a day.

When my son turned 18 and our family lost the status of a large family, things became more complicated.

If earlier we could turn to palliative care and get qualified help for three children at once in one day, now only a district polyclinic or paid palliative care with hospitalisation for at least 12 days is available. Of all the privileges, only a stable social payment remains.

We live, rejoice in every day, give thanks for all that we have and even more thanks for what we don't have! I perceive all difficulties as a journey, which I definitely need to go on in order to overcome it!

Irina Khryachkova, 43 years old

I am a single mother of a wonderful, as she is often called, "angel-like" daughter, Bozhena. Bozhena is now 2.8 years old. She has been diagnosed with RAS, FTD. She was diagnosed just a few months ago. Therefore, my main motivators and colleagues are special mums of unique children who inspire and give strength by their example.

on 24 February, early in the morning, I received a phone call from my brother's wife with the words: "Get ready, we are going to Lutsk". My first thoughts were of my mother who was very ill with diabetes and gangrene (she died on 30 June 2023). To the question "what happened", I got the answer - the war started.

Even hearing the explosions, I couldn't believe it. I thought it was only intimidation. I could not imagine that a "real war" could start in our time.

Unfortunately, I was wrong. My intuition failed me for the first time. I tried to reassure my neighbours who were leaving en masse, asking them not to make a fuss and "not to panic". I myself was reluctant to pack up. I still didn't believe....

But one close person told me to pack everything I needed and at least move from the left bank to the right bank. That's when I realised. We went not far away, to Volyn, to my parents. There, Bozhena and I stayed until 10 May 2022.

A few weeks before the war, when Bozhena was 1.1 years old, I started going to different neurologists because I was worried that Bozhena was not walking.

All the doctors reassured me, saying that there was still time until the age of one and a half. All our development was on the "limit scale". Pregnancy was hard, so I was happy when Bozhena took her first steps in Lutsk, when she was 1 year and 5 months old.

I didn't think about travelling abroad. I couldn't and didn't want to be at a great distance from my mum.

Volunteering, working on the information front was what calmed me down and gave me strength.

As I said, last May we returned to Kiev. Bozhena was confidently walking, or rather, running. Every day I noticed that she did not understand the addressed speech, she had field behaviour, she spoke only a few syllables.

I started looking for ways of proper socialisation, opportunities for pro bono rehabilitation and so on.

Now I hear from other mums who have children with disabilities and are abroad about the striking difference in government support.

Yes, we already have some steps, for example, inclusion. But our reforms, as usual, are not finalised. And even about Inclusive Resource Centres and other opportunities that we can get free of charge, there is little information.

That is why it is very important that mothers of special children unite in groups and share their experience. It is also important to cooperate with public and charitable organisations.