“I dream that Maria will start walking...”

The hard struggle for her daughter's health has been going on for ten years, since she was born, says Lesia from the village of Potyelići near Rava Ruska. What gives the family strength to overcome daily difficulties, strengthens their optimism, and what the support of the Polish-Ukrainian project “Family to Family” means to them - we asked them to share during our meeting.

“The most difficult thing is to see how Maria feels, how hard it is for her... Her whole life has been hospitals. My daughter was born with a complicated diagnosis. Even before she was born, we knew we were going to have a special child,” says Lesia. ”Maria has undergone many surgeries, but unfortunately, there has been no significant improvement. Last year, after the last two surgeries, the pain that had been bothering her receded. But the ability to walk has not returned...”

The problem was discovered at 31 weeks of pregnancy, says our interlocutor. The child was operated on the next day after birth, and three months later she underwent a second complex surgical procedure. Since then, she has undergone periodic surgeries and rehabilitation. The problem with the musculoskeletal system is complicated: the child cannot walk. Ms. Lesia says she has to be with her daughter all the time. She has to change her clothes, put in a catheter, change diapers, feed her. After the birth of her child, she had to quit her job and subordinate herself to the new rhythm of life. And this is a daily hard work - caring for a sick child... However, it is gratifying and inspiring to see that Mariya is growing up to be a smart, intelligent girl. She has a good character. Despite all the difficulties, she finds reasons to be happy. And she supports others with her optimism.

“She really likes learning. She has been studying well, with individualized teachers since the first grade. We are very grateful to the teachers for coming to our home to study with our daughter. The first teacher was very kind. Liudmyla Stepanivna became like a real mother to Maria. She fell in love with her, even spent her extra time on her. My daughter still remembers her and waits for a call from her.”

Mariya is currently in the fifth grade. She likes English and Ukrainian. She has loved music since first grade, her mother adds. She loves literature, both Ukrainian and foreign. She loves to read, and reads a lot. Her current favorite book is Amy and the Secret Club of Supergirls by Polish writer Agnieszka Mielech. She has already read 4 volumes of this series.

Maria shows us her books and toys, her favorite doll and drawings. The girl draws willingly. She also loves flowers. Most of all, she likes roses and lilies. Together with her mother, they plan to plant a flower garden near the house in the spring.

The family moved into this house last summer. They built it themselves for 17 years. Before that, they did not have their own home. “My husband and son did everything with their own hands, there were no craftsmen here,” says Lesia, ”and they also made the furniture themselves. My son has been a friend of wood since childhood. He is currently studying in Lviv. He comes home on weekends. Mariia always looks forward to seeing her older brother, she is very attached to him. My son also keeps bees, he made hives and frames himself. But this year, however, there was not much honey...”

Now, in her new home, Mariya has her own room and space to study. And a place to exercise - every day she does a set of exercises with the help of her mother. At least an hour of time should be devoted to this every day. Exercise helps to maintain physical condition, although Lesia says that significant changes require significant rehabilitation. For example, in a center like the one in Modrychi, Lviv region.

“When we went there for the first time, Maria was 2 years old and did not walk. In Modrychi, she was put on a cane, and since then she has been moving slowly with the help of a support. At least a few steps, but she walked on her own. Although we were not promised that she would be able to move independently. When she took her first steps, we were happy! But when severe pain began a few years ago, we had to operate. After that, she stopped walking altogether. And maybe it would be good for us to go to that center again, but it is very expensive for us. Once we were there at our own expense, and another time we were lucky to get there under the state program to support children with disabilities. But now this state program does not exist. And we are not able to pay for it on our own, a day of treatment costs more than 6300 UAH. That was a year ago, and now it's probably even more expensive.

Unfortunately, doctors do not predict anything better for us. They say they would like to see it stay at the current level...”

Thus, every new day is a constant struggle for her daughter's health, Lesia admits. She emphasizes that the assistance from the Polish-Ukrainian project “Family to Family” has been a great help to them: “We were able to cover the cost of medicines for the child. Maria takes a lot of medications every day, and they are very expensive. In addition, she needs catheters and diapers, which are constantly needed. Therefore, the funds we have thanks to the project are a great support for us. Especially at this time, when my son is studying and my husband is unemployed, because it is difficult to find a permanent job in our area. Every person, every Polish family who supports and helps Ukrainian families in difficulties during the war, has our great gratitude and respect.”

Lesia says she used to love embroidery and cooking. Now she doesn't have enough time for that. And she doesn't always have the desire to do it either, she admits.

“What do I dream about? For Maria to be able to walk. This is what I ask God for the most,” she says in parting.