When her son was diagnosed with leukemia at the age of thirteen, the family’s daily life changed to hospital wards, long treatments, bone marrow transplants, and constant fear for the future. But during the hardest times, Alina discovered something she did not expect – the fellowship of other mothers.
It was precisely in the hospital corridors, between waiting, hope, and painful losses, that the idea was born, which later became the “Tuk Tuk Širdele” foundation. A foundation for mothers who, fighting for their child or coping with their loss, often remain on the margins of their own pain.
“A few of us mothers said: we need to do something for the mothers, for us. We ourselves need help,” recalls Alina.
Today, her own family has been living post-transplant for four years, but Alina has not closed the door to the children’s oncology ward. She returns there for others – mothers who are now going through what she once had to endure herself.
A diagnosis that changes life
“The hardest part is acceptance,” says Alina about the first days after hearing the child’s diagnosis. At that time, according to her, many questions whirl in the mind: why did this happen to my child, why to our family, what awaits next? Often there are no answers.
“You have to live, go on, even though your life completely changes after the diagnosis,” she says.
After the initial shock, treatment begins, complications, uncertainty, and fear. But one of the hardest experiences is realizing that not all stories in the hospital end happily.
Alina still remembers her first encounter with the loss of a child in the ward. According to her, seeing your son’s friend die is hard to put into words.
“When you see with your own eyes a child passing away, it is very, very hard. And then your own fears arise: ‘What if the same happens to your child? What will happen next? What awaits us?'” she recalls.
Her son’s family story ended well. Although health problems remain and medical supervision is still part of life, Alina says she values what the family managed to overcome.
“When you think about what could have been, this is the best possible outcome,” she says.
However, Alina did not want to close the doors of the children’s oncology ward and never return. On the contrary – together with mothers who had similar experiences, she returns to where she once so desperately needed another person’s support.
Quarantine, hospital ward, and the feeling that you can’t endure anymore
The beginning of Alina’s son’s cancer treatment coincided with the COVID-19 pandemic and quarantine caused by the coronavirus. Strict restrictions were in place in the hospital, relatives could not visit, so the mother beside the sick child was completely isolated from normal life.
“We really missed that communication. No one could visit, they only came to wave at the window. In the first months, I thought I would go crazy. It was very hard,” recalls Alina.
It was hard not only for her. The teenager saw his mother’s pain and himself asked her to leave the ward for a short time because it was too hard for both to experience fear at the same time.
Over time, the greatest support for her became other mothers. Those who did not need long explanations about what it means to wait for test results, fear complications, or live from one treatment day to another.
“We would go out, talk, support each other,” says Alina.
It was this fellowship that helped her see something that, according to her, is talked about much less: when a child is seriously ill, all attention rightly focuses on them. But help is also needed for the mother or father beside them.
“We need to do something for the mothers too”
According to Alina, there are many organizations helping children, but the women who met in the hospital felt that there was a lack of space specifically for mothers.
“We decided that we need to do something for the mothers, for us. We ourselves need help. And somehow we decided – let’s do it. Let’s open a foundation that will be about mothers,” recalls Alina about the start of the foundation.
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At that time, she did not yet know where to start or what the organization would be called. The name was dictated by a very personal story. Alina remembers a girl named Izabelė who had cancer. One time her mother sent a recording of Izabelė singing a popular children’s song “Tuk širdele, tuk tuk.” Hearing it, Alina understood: there was no doubt, the foundation would be called “Tuk Tuk Širdele.”
Izabelė is no longer with us today, but the foundation’s name inspired by her singing remains forever.
Alongside Alina, another “godmother” of the foundation, Birutė Wish, has always been shoulder to shoulder. Although her son’s story is not related to cancer, the hospital and their family had become a “second home.”
Birutė put all her experiences into her book “You Are My Gift,” which is a sensitive story about a little boy, Jokūbas, whose fate was to become a powerful fighter for his life.
“A rare genetic disease diagnosis and the necessary bone marrow transplant became the greatest challenge but also a lesson of strength for the whole family. This difficult experience turned into a bright journey of faith, love, and endless gratitude. Its peak was the touching meeting with Jokūbas’ ‘blood brother,’ donor Phillip,” the book presentation says.
Reminding mothers that they have to live: have fun, dress up, smile
“Tuk Tuk Širdele” brings together mothers caring for seriously ill children and those who have lost their children. At first, Alina admits, there were doubts whether women with such different experiences could be brought together into one community. Would it be too painful for a mother who lost a child to hear another woman’s happily ended story?
But the very first events showed that everything is the opposite. “A mother who lost a child will still have to go out into society where there are children, there are recovered children. She will have to adapt. And she can start that from our camp,” says Alina.
She emphasizes that these meetings are not just about sitting and talking about pain. The foundation’s idea is different – to bring a woman back to life, even if only for a short time, where she is not only a mother of a seriously ill child or a mother who lost a child. She is still a woman who can laugh, dress up, try new things, and experience joy.
“We try to involve the mother in life. The mother must continue to live. Because if the mother collapses, everything around collapses,” says Alina.
Only eight mothers participated in the foundation’s first camp. Now, several dozen gather for meetings. At one of the recent events, about thirty women had the opportunity to fly on planes. “We all flew, we all laughed. That day was about them and for them,” recalls the foundation’s founder.
Another meeting took place at a manor. The women dressed in dresses, put on makeup, and participated in a photo shoot. These may seem like simple things, but for some mothers, they became a symbol of returning to themselves.
“One mother came up to me and said: ‘Alina, I haven’t worn a dress for nine years.’ Then she said: ‘You know, I even put on lipstick,'” Alina says and adds that such moments, according to her, best show why this activity is needed.
A safe space where you can open up
Women who have lost children hold a special place in the “Tuk Tuk Širdele” community. Alina notes that people often avoid talking to them about their deceased child. Usually not out of bad intentions – people simply fear reminding them of painful experiences, do not know what to say.
But silence does not always help. “A mother wants to talk. A mother does not want to forget her child. She continues to love and will love her child,” says Alina.
Therefore, one of the foundation’s missions is not only to bring mothers together but also to change society’s attitude. “We want society to understand: there is no need to be afraid of these mothers. On the contrary, they need support,” she emphasizes.
The foundation also organizes meetings in memory of children. One of the largest gathered about 300 people – during it, children who are no longer with us were honored. But the foundation’s work does not end with events. Alina and her comrades continue to return to the hospital – to meet with children being treated there, their mothers, and fathers. They try to visit the ward every month.
It is like a closing circle: once they needed someone who understood, and now they can be that person for another mother.
“Tuk Tuk Širdele” has only been around for a few years, so challenges are not lacking. They need to find financial support, partners, people who could contribute to activities. But Alina says she constantly meets good people ready to help. And the most important proof that it was worth starting is the growing community of mothers.
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