The most important thing is to believe and never give up

“Sometimes people ask me: what would you choose—Zlata retaining her intellect but being physically disabled, or the opposite? I would very much like my daughter to be intellectually healthy because it's incredibly difficult when a child doesn't speak. You can't communicate, even about the simplest things, like what hurts and where. As a mother, I have to solve thousands of puzzles every day to alleviate her condition…” says Nataliya Solianik from Kharkiv, mother of Zlata, a girl with a rare form of Rett syndrome and epilepsy.

— Nataliya, when did you learn about your daughter's diagnoses?
When Zlata was 3.5 months old, she began experiencing epileptic seizures—200 to 300 per day. Just yesterday, she was a healthy child, and suddenly she turned into an immobile body, a vegetable, like jelly. Her eyes stared into nothingness. We spent 2.5 months in intensive care, and no one could determine what caused this condition. Eventually, we consulted a French epileptologist, neuropediatrician Professor Olivier Dulac. He suggested that Zlata had a genetic disorder, the so-called Rett syndrome, in an atypical form. It's primarily diagnosed in girls and is characterized by early and frequent epileptic seizures, muscle weakness, and intellectual disability. But to confirm this diagnosis, we needed to undergo an expensive test costing over 3,000 euros. We didn't have extra money at the time; the only option was to sell our home to pay for the research. So, we decided it was better to direct those funds toward habilitation. Since then, Zlata and I have been constantly fighting and moving forward with small steps.​

— 200–300 seizures a day is a lot. Has the situation improved now? Has Zlata's condition eased?
When my daughter was diagnosed with epilepsy, I didn't know what it was or how to live with it. Gradually, I sought information, read, and communicated. Doctors only prescribed various medications, but there was no result. The seizures continued, and we spent months in intensive care. At some point, I thought that was it—we wouldn't get out of there. Later, I learned that only three antiepileptic drugs should be taken simultaneously, while Zlata was already on five. Doctors didn't hesitate to say she wouldn't sit or walk—they had given up on her. I started to act at my own risk. First, I completely changed my child's diet. After consulting with biochemist Marva Ohanyan, I switched my daughter to natural food. We gave up dairy products and those containing gluten. At first, it was difficult because I didn't know how to cook the food, where and what products to get. But today, I've adapted; I cook the same for myself and my daughter. In addition to the diet, I gradually reduced her medication intake. And it yielded results. The first remission lasted nine months. I relied solely on my own feelings. I saw that my daughter felt bad after dairy, so I stopped offering her dairy products. I wanted to catch up on everything with physical exercises immediately, but I noticed I was only making things worse. I stopped. And since then, we do everything gradually.​

— How old is Zlata? Can she sit, walk?
My daughter is 9 years old. And now she can sit without support, can get up from a chair, and walk for about 10 minutes. We achieved such results thanks to comprehensive therapy: kinesitherapy, swimming, sensory work, hippotherapy. Before the full-scale invasion, we also worked with an osteopath, but now he has moved to Kyiv. Our swimming coach also went to England. So, the list of activities has decreased, which worsens Zlata's condition. Communication with horses during hippotherapy has a very positive effect on her. In general, since February 2022, hippotherapy has been the only therapy available to us because we lacked funds for full rehabilitation. We also had to rent housing since Saltivka (a district in Kharkiv) is constantly shelled. Therefore, the financial assistance from the NGO "Epi-Prosviata" was very timely. Thanks to this, Zlata was able to undergo therapy last year. And I hope we can do it this year as well. Because without physical rehabilitation, she stops holding her head, her back hurts, not to mention that she won't be able to get up from the wheelchair.​

— Today, there's a lot of talk about barrier-free environments, accessibility for people with disabilities. How does this work for you? How difficult is it to move with a child in a wheelchair from center to center to make it everywhere?
Barrier-free environments don't work for us, unfortunately. Even calling a taxi that can accommodate a wheelchair is very difficult. After all, special frame wheelchairs don't fold. Unfortunately, the ones offered by the state for Zlata's age no longer fit her in height. When Zlata was smaller and weighed less, I carried her in my arms, and we went wherever necessary. Today, my daughter weighs 27 kg, while I weigh 50. And it's practically unrealistic for me to just carry her in my arms. So, we always wait to see if a taxi of the appropriate size is available. We often get refusals from drivers, and we miss procedures.​

— What about inclusion: kindergarten, school?
That's also a taboo. I once enrolled her in kindergarten, but after half a day, they called me and said to pick up Zlata because they couldn't cope. After all, she needs constant supervision, feeding, diaper changes, and no one wants to deal with that.​

— If there's such a problem with mobility, what about air raid alerts? Do you manage to reach bomb shelters, considering Kharkiv is on the front line?
No, bomb shelters are not for us. Any extra noise can provoke seizures. Besides, I simply won't have time to dress her, gather things, let alone physically carry her. So, I just take her in my arms, and we go to the corridor to hide behind two walls.​

— How does Zlata react to alerts and explosions?
Until recently, everything was more or less normal. But the last few hits were on the neighboring street, in the neighboring house. Many explosions, it was very loud, everything was burning. In our house, even the sewer pipes cracked. My daughter was very scared, screamed, cried, seizures resumed. Her temperature immediately jumped to almost 40. It took us several days to recover from that. And each such case is a regression because we have to relearn everything anew.

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