Six-year-old Lviv resident Viktoriia Poliuga, for whose treatment the entire Lviv community came together five years ago, started Year One at an ordinary school on 1 September. For her mother, Mariana, this is a day she once feared would never come.
The new pupil’s morning began earlier than usual: her mother was plaiting her daughter’s hair while Viktoriia checked her pencil case and packed into her rucksack the exercise books and school supplies she had chosen herself. The girl already knows her letters and numbers, is learning to read and is now beginning a new stage of life — going to school together with her peers.
The family live not far from the school, so the journey takes only a few minutes. There is an accessible pedestrian crossing leading to the building, and inside the school they have taken the child’s needs into account: the classroom is on the ground floor, with a canteen and an inclusive toilet nearby. Viktoriia studies in a mainstream class, sits at a desk with the other children and communicates with them actively.
The girl’s first teacher is Nataliia Kozak. Viktoriia met her and her future classmates two years ago at preparatory classes for school. Her mother admits she was worried about how the children would react to a classmate in a wheelchair, but there were no barriers between them — they played and talked together.
During lessons, Viktoriia will be accompanied by her mother, Mariana Kotsovska. She has completed special training and will work as the child’s assistant: helping her daughter get to the school, the canteen and the toilet, and accompanying her during breaks and after lessons. Writing is sometimes more difficult for the girl, but she has already found her own way: when her right hand gets tired, she takes the pencil in her left or uses her left hand to help her right.
The road to this day has been very difficult for the family. Five years ago, Viktoriia was diagnosed with spinal muscular atrophy (SMA), a rare genetic disease that was progressing rapidly. Around 50 million UAH had to be raised for treatment. Residents of Lviv, businesses, volunteers and benefactors all joined the fundraising effort. In the end, they managed to raise the required amount, and the girl received life-saving treatment.
Mariana recalls how weak her daughter was at the start of the fight against the disease, in particular the flight to Italy for rehabilitation, when the child’s body was so weakened that she could barely feel her in her arms. The woman admits that at the time she feared the day when Viktoriia would go to school might never come. Now the girl attends rehabilitation every day, goes swimming and works hard to become stronger.
According to Nataliia Kozak, her classmates accept Viktoriia well, and the girl herself had been eagerly looking forward to spending time with peers, as she did not attend nursery and missed being part of a large group of children. The teacher describes her as incredibly positive and says that Viktoriia never complains and goes to school with great enthusiasm.
Despite her diagnosis, the girl strives to be independent and already has a dream for the future — to become a physiotherapist so she can help others. She invents exercises for herself and works on improving the mobility of her legs and arms. The family’s greatest wish is that one day Viktoriia will be able to walk on her own.
At the start of the school year, the Mayor of Lviv, Andrii Sadovyi, congratulated Viktoriia and reminded everyone that it was her story that, five years ago, united the entire Lviv community around raising funds for SMA treatment.
“Five years ago, Viktoriia brought our entire Lviv community together. Back then, many people learned what SMA is, when without proper treatment a child is immobilised and may even die. There is no such treatment in Ukraine, because it is extremely expensive. Her parents began raising funds, the city supported them, and together we raised 2 million dollars. As a result, Viktoriia received the necessary treatment, and today she has already started Year One. She smiles and talks with her classmates. I am very happy for her, because at the time few believed it was possible, but when a community is united, God helps and everything is possible,” said Andrii Sadovyi
The Mayor wished the girl success in her studies, good friends and a bright future.
Until the age of eight months, Viktoriia developed with no signs of illness, but later her parents noticed that she had stopped lifting her legs. After genetic testing in February 2021, doctors confirmed a diagnosis that leads to muscle atrophy, loss of the ability to move and, over time, even to swallow and breathe. Her mother took her daughter for rehabilitation in Italy, while volunteers launched a large-scale fundraising campaign for an injection of the drug Zolgensma.
Zolgensma is the most expensive gene therapy drug in the world for spinal muscular atrophy. It does not cure the disease completely, but it stops its progression, giving children the chance to breathe, sit and even walk independently. The drug is administered once, and it must be given before the child reaches the age of two.
In 2022, in the USA, Viktoriia received the life-saving Zolgensma injection, worth 50 million UAH. Since then, she has been undergoing long-term rehabilitation, the result of which is that today she has started Year One together with other children.