Every rehabilitation is a small step forward

“When the neurologist diagnosed microcephaly and the hospital issued paperwork for disability status, I still could not believe it was permanent. I thought that we would get advice, receive additional treatment somewhere—and everything would be fine...,” shares Inna Tanasiienko, mother of five-year-old Anastasiia.

• “Anastasia is five years old, yet she doesn’t walk, doesn’t sit independently, and doesn’t hold her head steadily…?”

• “Yes, unfortunately. My daughter can’t sit or stand on her own yet. If supported, her legs bear weight, but her back is very weak. She holds her head unsteadily and tends to droop it down. I’m always reminding her: ‘Nastia, lift your head!’ And she understands me and tries to do it. These are all consequences of the diagnosed conditions: microcephaly; spastic tetraparesis with no independent ability to sit, stand or walk; epilepsy; myoclonic seizures; and intellectual disability.”

• “And what about speech? Does Nastia talk?”

• “After sessions in Kyiv at the Rehabilitation Center for Children with Organic Nervous System Disorders—where professionals worked intensively with her—she began to repeat many words. Many speech therapists are reluctant to work with Nastia due to her epileptic seizures—it’s a huge responsibility, and no one knows what might happen. But in Kyiv, after consulting with an epileptologist, speech therapy massage was approved for her. Now she reproduces some words, although she doesn’t always understand them. For example, when I say ‘Take it,’ she repeats the word but doesn’t perform the action. That’s still something we need to work on. When we enter the doctor’s office, she always says, ‘Good afternoon.’ Sometimes she repeats one word several times before switching to something else.”

“She loves listening to songs. I play educational musical cartoons about fruits, vegetables, and animals—she repeats the melodies and lyrics. Every morning at 9 AM she sings the Ukrainian national anthem—and if you listen carefully, you can make it out.”

• “Five years is both little and a lot at the same time. Do you remember the moment when Nastia’s diagnosis was first revealed?”

• “I learned about the pregnancy at 15 weeks. I was undergoing gynecological treatment to get an intrauterine device placed—and during a routine ultrasound, I was told I was expecting my fourth child. I quickly registered at a women’s consultation clinic for timely tests. All results—including the NIPT test and others—were within normal limits. But during delivery, the baby inhaled green-tinged amniotic fluid and experienced oxygen deprivation in utero. Immediately after birth, Nastia was connected to a ventilator. She spent the first three weeks in intensive care, where epileptic seizures began. After treatment, the seizures stopped for a while but resumed at around ten months old.”

“After being discharged, I began attending checkups with a pediatrician—and I became alarmed when her head failed to grow over three months. I sounded the alarm and sought evaluation at a private clinic. When the neurologist diagnosed microcephaly and the hospital directed us to apply for disability documentation, I still could not believe it was permanent. I thought we would get further consultation or treatment somewhere—and everything would be fine. But...”

“I remember it was in 2022, right as the full‑scale invasion began. Someone told me about the Koziavkin clinic in Truskavets, and I started raising funds to get there for rehabilitation. I reached out to MPs, entrepreneurs, and kind individuals. When we finally got to the clinic, I expected that after the procedures, Nastia would surely sit, begin to walk, and speak… It was only there that I came to realize how much time, effort, and persistence is needed to achieve even minimal results.”

• “How often does Nastia need rehabilitation? And is that possible now, after the full‑scale invasion began?”

• “To give her the best chance at a normal life, we moved from the village to Vinnytsia. Because we rent a place and don’t have permanent registration, it’s difficult to access free rehabilitation services. But thankfully, there are compassionate people who respond to my requests. Nastia needs at least six rehabilitation courses per year, and ideally has developmental sessions two to four times a week. Since the beginning of the year, we've visited rehabilitation centers in Vinnytsia and Kyiv. Now I am raising funds for a visit to the Koziavkin clinic again—and the NGO ‘EpiProsVita’ is helping us. Nastia especially enjoys sessions with speech therapists and occupational therapists. Physical therapy (LFC) is more difficult—she often cries as sometimes the exercises feel painful. But it's necessary so she can develop posture, hold her head, and eventually sit and walk independently.”

• “Nastia moves around everywhere in a wheelchair. How is the accessibility in Vinnytsia? And how do you travel to other cities?”

• “Over the past two to three years, Vinnytsia has seen many positive changes. There’s a specialized social taxi service that provides free transport where it’s needed. Accessible public transport has been introduced. They are also equipping ramps, curb cuts, and sidewalks for wheelchair users. To travel to other cities, we take the train. Ultimately, you get used to it and learn to overcome obstacles. There are always kind people willing to help. I have an old Zhiguli car and if I need to visit several places in one day and have no one to leave the children with, I drive myself.”

• “Does Nastia have the possibility of attending a kindergarten, to be in a peer group?”

• “In Vinnytsia there’s a kindergarten for special-needs children; Nastia has been enrolled there for two years. But due to the full-scale invasion, that facility is temporarily closed. I wanted her to attend a regular kindergarten with her older sister, Khrystyna—but to do so, I would have needed to complete assistant training to support her there. However, they did not issue me a referral because Nastia was already enrolled in a specialized facility. Interestingly, parents of children with disabilities banded together, rented a space, and created a daytime care center—but it only accepts children aged six and older. So now we’re waiting until January.”

• “What gives you strength and keeps you fighting for every milestone for Nastia?”

• “Perhaps it’s my strong faith and hope for the future. I’m convinced that my daughter will walk one day. Every rehabilitation is a small step forward. I always anticipate what progress might come next. I'm always worried: what will happen to Nastia, and the children, if I'm no longer here? I even started seeing a psychologist to deal with that fear of the unknown. And I’ve come to understand that I need to focus not on what might happen to me, but on helping my child become more independent.”

— Kateryna Novitska.

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