A Personal Jesus for Nia. How a Showbiz Girl Became a Mom to a Child with a Disability, and a Philanthropist

Nia is known for her activism in patient organizations and lobbying for the legalization of medical cannabis for seriously ill children. She is also an active entrepreneur and a member of charitable organizations.

The social portal asked her to talk about her experience and what challenges the war posed for her and her daughter.

Social Portal: What were you doing before the baby was born?

Before the birth of my child, I worked mainly as a PR person in the music field and as a project manager for cultural events. She managed to find a bright hair coloring studio Priton Krasoty was a co-owner of the Keller bar. Still, it went bankrupt, and the new owners revived it and reformatted it into a big beautiful project. A month before the birth of Eva, she tried to open another Zbirka bar with her friends. But as soon as he began to go into profit, he was "eaten" by the cod. At that time, my clients were BAHROMA, Epolets, YeYo, Panivalkova, nightclubs Boom Boom Room, L8, White Nights, Believe, and many others. My life was like a party with no beginning and no end. During the night, I could visit 5-6 measures, and in the afternoon, I was already planning a strategy for releasing a new single. At that time, most of all in my life, I did not want a child because I liked the way of my life, freedom, courage, and lightness. My childhood was not very long, so I wanted to enjoy life to the fullest. Then I found out that I was pregnant, and I first experienced fear. I thought my life was over, and now I'm going to be locked in 4 walls with a screaming baby.

Q: How has life changed since then?

When Eva was born, I didn't feel anything. I gave birth at 41 weeks, even the "walk" function was a super heavy task, and the labor lasted 18 hours. When it was over, she asked me to bring a laptop because it was necessary to post a photo report from the studio party. Not a day has I had a decree or a real vacation. I looked at Eva and did not understand what to do; before her, I had never held children in my arms. I was afraid of her. Eva slept for 40 minutes, woke up, screamed, ate for 5 minutes, and fell asleep again. It looked like a mockery: I didn’t sleep for three months, I constantly tried to express milk because Eva ate poorly, and it disappeared, continued to work, and went crazy because she was rapidly losing weight.

I looked for doctors, and in the 4th month of life, she still did not smile, could not eat, did not turn over, and had extraordinary movements. The seventh neurologist I visited stated that Eva had an epileptic seizure right at the examination. We were picked up by an ambulance and taken on a tour of hospitals for MRI, CT, and other tests. We ended up in a hospital with a neurological department, where they told me every day that Eva was going to die, and I didn’t understand why. I didn’t understand what epilepsy was at all; for me, it was next to a cold. To avoid going crazy, I began to work three times more. Gradually, I completed several medical courses and understood what I was dealing with.

By her diagnosis, I treated Eve like a capricious child. When her real reasons for tantrums were voiced to me, she was hurt and scared, and it was around the clock I began to see clearly.

Eve changed me forever. I fell in love with her with the strongest possible love, and since then, I can not spend a day without her.

I joke that Eve is my personal Jesus; she opened up a different world and values ​​for me.

Thanks to her, I began to advocate for the legalization of essential medicines, including medical cannabis, began to take part in medical reform, helped create inclusive spaces, and changed the vector of my work by 180 degrees. >

S: What charitable projects have you implemented, and what skills did you use in your "previous" life?

Charity is a comprehensive concept because I have had monthly donations to funds for five years. But if we talk about large-scale ones, we provided 10,000 people with epilepsy with medicine during the war, 500 were evacuated, and 200 were transported around Ukraine. In addition, I have always helped foundations with PR. Last year it was the Krona Foundation and their project to equip a ward in Amosov for the delivery of women with heart defects. During childbirth, they underwent heart surgery, thus saving both mother and child. Also, during the war, I held an in-depth consultation of 10 charitable foundations on organizational processes and worked with the media. Together with Patients of Ukraine, we have developed a separate brand PORA, which helps Ukrainian CSOs to obtain medicines for their patient groups.

The primary skill that helps me is responsiveness to people's problems. Every situation can be mine, so it cannot be ignored.

Eva showed me this. I never thought about epilepsy, but it happened in my life. If I had not ignored it earlier, then Eve would already have much better infrastructure than what is currently being created on the go.

S: Where did the war find you?

The war found me in Kyiv in a rented apartment, where we lived with Eva and my cat Boris. This did not come as a surprise; I was waiting for these events, but not on such a scale. I did not think that the elevators would be turned off immediately and so I had to take down Eva in a wheelchair, a cat, a suitcase, and a bag with everything cat from the 13th floor. By weight, it is more than 40 kilograms. Let's say that the "workout" at 6 am was powerful.

S: How was the evacuation with the child?

We spent several days in Kyiv at my husband's apartment. It has the 3rd floor and is physically more accessible, with the elevators not working. Then we went to Truskavets, where Andrei's (husband's) parents were. This decision was made because Eva spent three days in the bathroom with pillows, and I could not look at them. For three years, we spent a lot of time and money so that Eva could move (in addition to epilepsy, she has cerebral palsy), and in the “bathroom” life, all the skills were melting before our eyes.

They stayed in Truskavets for less than a week; there was no rehabilitation, and Eva's food for a particular diet disappeared. In addition, Eva is on medical cannabis, and the crisis at the border made it impossible for her to receive medicines on time.

S: Why did you choose Poland? What are the opportunities for inclusion?

We didn't choose Poland in a balanced way. It was just a few days on the way to the evacuation; we were tired. Krakow was close, and our friend Anton lives in Krakow, who booked a hotel for us, helped with translation, and it was morally easier to come somewhere and not to an empty city.

The choice was right. Here we got acquainted with the organization Stowarzyszenie Patchwork, which deals with Ukrainian families with people with disabilities. Now they already have about 150 wards. Also, Eva went to kindergarten for the first time in her life. The teachers love her, and she feels like an ordinary child. All space in Poland is adapted for inclusion: transport, roads, and public institutions. Therefore, Eva and I can always be together and move quickly.

S: Is there anything you would like to adopt for Ukraine?

Yes, now I dream of opening such a kindergarten in Kyiv. This will become possible after the victory. But we still do not take children with epilepsy to educational institutions, violating the law on accessible education for all. I hope the state will support us, although we can only open with grant funds. Ukraine will need to restore a lot, so there will likely be no funds for our task.

And if we talk about some everyday things, the Poles are very fond of children, spend a lot of time with them, and have everyday leisure and recreation. I want us to treat our children the same way so that children are treated with respect and on an equal footing.

S: What projects did you have during the war?

My first project appeared three hours after the announcement of the invasion. I created a Google doc for epilepsy patients asking them what medications they need, and together with the online learning project "To the Lesson," we sent them to their students. So we collected the first 2000 applications for medicines and began to work on them. Then, one of the pharmacy chains approached us, requesting help finding pharmacists. Pharmacies were closed because people had been evacuated, and no one could go out to work. During the week, we received 200 applications, and the pharmacy opened an additional 78 pharmacies. Then the evacuation requests began. In total, we provided 10,000 people with medicines and evacuated 700. Since the beginning of the summer, our studio in Kyiv has been working; it needed reorganization, which we successfully carried out and are gradually restoring capacity.

For myself, I took a conscious position not to work for six months on commercial projects and only volunteered for people with epilepsy.

At this time, I managed to write a book for people in difficult life circumstances or how to live happily when they are. Now I'm looking for grants and funding because I want it to be accessible to people.

A month ago, I realized I wanted to go to work; I had already done enough and enjoyed more systematic work. I was lucky to find the charity foundation "Children of Heroes." This foundation looks after children who lost one or both parents during the war. My task is to cooperate with the media so that everyone in need knows about the existing assistance. Grants and donors can safely transfer money to us for targeted services to children.

In Poland, I also do social work. I am writing for the oldest Ukrainian-language newspaper in Poland, Our Word and Ukrainians in Krakow, with whom we are also doing a large photo exhibition about Ukrainian families with children with disabilities. Immediately at the final stage, in two months, the photos of our heroes will decorate the central square of Krakow.

Q: How do you evaluate the results?

For me, any number of my activities will not be enough. I will calm down only when every Ukrainian has access to high-quality and timely treatment and people with disabilities have a decent standard of living and freedom of movement.

S: What would you like to wish the families of children with disabilities?

Believe in your children. They are stronger than all of us put together and have repeatedly proven it. The second is to allow yourself to live a happy life. If you need a manicure or coffee in a cafe for this, do it. Do not be afraid of judging others, and do not pay attention. This is your life, your struggle, and your well-deserved coffee.

The main rule that helped me cope: the only function of a mother is to love her child.

Will my function change depending on how many hands or skills my child has? Hardly. I love my child and am happy I have Eve, who made me better, kinder, and more comfortable.