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The business of life: how mothers of children with rare diseases become entrepreneurs
In April 2026, the international forum "Rare Women" will be held for the first time, which is organized by the charity foundation "Butterfly Children" in Moscow. It is dedicated to mothers raising children with rare diseases. One of the problems that will be raised at the forum is the lack of attention to such women, although they also need help, because at the moment of determining the terrible diagnosis of a child, their whole world collapses, including their own. How to get out of a state where the whole life becomes subordinated to a child with a rare disease, Izvestia tells the example of several stories.
The ability to accept and act
Irina Belozerova is the mother of a child with spina bifida. This spina bifida is a congenital malformation in which the vertebrae do not close completely. The spinal cord and nerves remain unprotected, and this leads to a large number of neurological disorders, up to the most severe.
The appearance of a son with such a diagnosis turned the life of Irina's family upside down.
— Life in the first year turned into saving a child. My husband and I were ready for anything when we heard the diagnosis in the late stages of pregnancy. But it was important for me not to neglect my eldest daughter, who was three years old at the time. I felt guilty that I was giving so much time and effort to my son, and she didn't have enough of my attention," she says.
It was a difficult time. I also had to deal with indifference, but more often with empathy and help. However, Irina for a while became a person who deals only with the child and his illness.
I managed to cope with this condition on my own, as Irina explains, due to the "inner core".
— It's probably some kind of ability to accept and accept the situation for what it is. And move, but at first just keep crawling," she says.
Irina is a very active person. In the first year, she tried all possible rehabilitation methods — she even flew to China with an 8-month-old baby. Throughout their childhood, her son and daughter lived on a large plot with their grandparents, eating natural products from their garden. This is how the Rostock eco-label appeared.
— One year we were just bombarded with apples. By the end of the summer, we didn't know what to do with them anymore, and that's how our natural marshmallow was born. Customers began to appear, who eventually came with individual orders. There are loaves, chips and snacks made from natural products," says Irina.
Soon she mastered the production of natural candles made from soy and beeswax, sets with pastilles and candles appeared, and then with tea, for which she grew and collected herbs herself.
— Combining this activity with the diagnosis of a child is easy, since we are not involved in rehabilitation in the usual sense of the word. We live, and our lifestyle already implies both health support and education. In a well-established process, both a special and an ordinary child receive everything they need for health and full development.
But it's not always possible to organize your life with a child with a serious illness without help.
Special treatment for rare
The Butterfly Children Foundation, which initiated the Rare Women project, first only for its wards, and then for the rest, says: the birth of a special child literally tears a woman out of her usual social and professional context.
— In the early years, the whole life of such a mother is subordinated to care: medical procedures, examinations, hospitalizations, condition monitoring and, most importantly, anxiety for the child's future. Against this background, a woman's own desires, career plans, and even basic needs fade into the background," Alyona Kuratova, founder and head of the Butterfly Children Charity Foundation, tells Izvestia.
Over time, the situation only worsens: a woman finds herself in a vicious circle where chronic stress, emotional burnout, social isolation and financial instability do not allow her to find resources for work, development and any kind of self-realization, she explains.
— In order for a mother to work, study or start her own business again, it is necessary first to restore her psychological state, to teach her how to build a balance between taking care of the child and taking care of herself. This is what the Rare Women project is dedicated to," says Alyona Kuratova.
During the work of the project, 75 "rare" mothers have already completed professional retraining, more than 20 have opened their own business or entered the labor market. Such a return to life is very important: the psychological state of a mother directly affects the quality of life of her children.
According to Alyona Kuratova, even with the most difficult diagnosis, a mother's life should not be reduced to servicing the disease, which in this case turns out to be the only significant content of a woman's life. And we are not talking about willpower or personal choice: many "rare" mothers simply do not have the resources, strength and support to focus on themselves, their desires and capabilities. That's why women need professional help, emphasizes Alyona Kuratova.
"It's like having two weights tied to my arms"
Natalia Yerasova from Kovrov, Vladimir region, is the mother of a child with epidermolysis bullosa. These guys are called "butterfly children" because they have very delicate skin that can be damaged with a single touch. The name of the disease only sounds romantic, in fact it is a very serious orphan disease that causes a lot of problems. For example, patients with this disease often require a special dressing, which can take several hours.
— The son was born without skin on his hands and feet. I'm an active girl, I had a lot of plans for the time after the decree, but they all collapsed with the advent of the child. It's like having two weights tied to your arms. And the doctors threw up their hands, no one explained anything about how to take care, what the prognosis for life was," she says.
The first "return to life" happened when Alyona Kuratova (now she is the director of the Butterfly Children Foundation, but there was no charity organization at that time) helped the family get to Germany, where there was already a system for helping people with this disease. Right now, children with epidermolysis bullosa in Russia immediately come to the attention of professional doctors, social workers and specialists of the specialized fund. But then, almost two decades ago, this disease was something completely unknown for the vast majority.
Natalia Yerasova returned from the trip a different person. She understood the prognosis for her son's life. She learned how to work with permanent lesions on the baby's skin, calmed down internally — and this calmness was transmitted to the baby.
— I've been on leave to care for a special child for 15 years, and I want to tell all the moms who find themselves in the same situation: don't despair. Being at home and seeing only four walls and the pain of a child, we fall deep into ourselves," she says. — Then my husband became my mainstay, who was the first to see a child without skin on his arms and legs. And he didn't be cowardly, but took my hand and said, "Yes, there are problems. But he's alive, he's breathing. We can handle it." We did it.
Later, in the project "Rare Women", Natalia again learned to perceive herself not only as the mother of a special child. She let him go as far as possible and began to take care of herself as well. And soon she went to work.
— Recently, on New Year's Eve, I found a letter that I wrote to myself two years ago. It was some kind of assignment in "Rare Women", we were writing a dream letter for two years ahead. I completed it and safely forgot. And now I'm looking — it all came true. My son is 18 years old, he lives his life, although I am always there and ready to help. But I'm still a young, beautiful, strong, resilient woman, and I have my own life.
Natalia Yerasova currently works as a deputy chief accountant at one of the enterprises, and she also makes Christmas toys with another mother, a ward of the Rare Women project, who has twins with cerebral palsy. This small business of her own appeared when Natalia lost her social benefits due to a bureaucratic misunderstanding and decided to study needlework with the money she saved. Now she creates unique Christmas tree toys — soft cloth men dressed in fashionable clothes. The process of creating them is as careful as the mother's care for her son has been all these years.
The author of the text has one such character, a rabbit in a red coat, hanging on a Christmas tree. And, perhaps, this is one of the most iconic toys both in terms of stunning appearance and significance.
Actions through tears
Inna Inyushkina is the founder of the Spin Bifida Charitable Foundation and the mother of a child with this diagnosis.
She admitted that she "remembers the first two years after Matvey's birth as if in a fog": her psyche blocks memories of how she came to accept her son's diagnosis.
— But I remember one day. My husband came home from work, Matvey was two years old at the time, and my eldest daughter was five. And I've been on maternity leave for all these five years, two of them with my seriously ill son. Then I just left the house, walked down the street and sobbed from extreme maternal burnout. I cried and told myself: I can't be just a mom for another day. It was after that that I came to my friends, with whom we dreamed of creating a Montessori school," Inna Inyushkina recalls.
This is how her first project appeared, and then her second, a charitable foundation.
— I have seen parents of children with spina bifida. I've seen the condition of these moms, especially if they're alone. They were completely burnt out women: with unwashed hair, in some dirty dressing gowns and with faded eyes. And I was thinking how to help these women by helping their children," Inna said.
She notes that in a situation where a child is diagnosed with a rare serious illness, few people pay attention to the mother.
— In 13 years, I have never heard a question from doctors, how do I cope with all this? And this is a serious problem. Doctors give a huge number of recommendations on what to do, how to take care of a child, and this is a huge list in case of serious illnesses. But no one asks mom: is it working out for you, is it difficult for you physically, psychologically, financially? — This is Inna Inyushkina.
Now her foundation also deals not only with children, but also with their parents. Inna Inyushkina emphasizes that this is no less important for a child: if he sees just a tired and burnt-out mother and understands that the reason for this sadness is himself, will he feel happy?
"My child would not like to see an embittered mother"
Anastasia Leshtayeva is another ward of the Butterfly Children Foundation, but her son has another genetic skin disease, epidermolytic ichthyosis. The child spent several weeks in quarantine in hospitals after birth — his parents simply could not get to him.
— When a child is born, a woman's life already changes dramatically, and when you are told that he has an incurable genetic disease, the world collapses. I followed all the doctors' recommendations, but I just existed, I didn't live. Like a programmed robot that should help a child, I lost myself. And after a while, I felt that I was losing the joy of life," Anastasia told Izvestia.
She was lucky to get into the foundation right away, and soon into the Rare Women project. It didn't grow out of this right away, but the second visit to the project turned out to be more effective: we managed to describe point by point what takes time and where to find it for work.
Now my son goes to a regular kindergarten. It is possible to cope with the difficulties associated with the disease. And Anastasia Leshtayeva has been the creator of the Chokertut brand for two years now. These are handmade jewelry made from natural and jewelry-making stones. Now she wants to create a small team and reach a new level.
— Every woman can be happy if she wants to be. I realized this while working with a psychologist and a coach. Without this, perhaps I would have continued to live in pain due to the child's illness and would have withdrawn into myself. What would that lead to? I don't think my child would like to see a mother who is dissatisfied and angry with the whole world," she stressed.
Natalia Zakharova, Daria's mother with epidermolysis bullosa, has a similar story. She was sure that she would be forced to devote her life to a child, went into depression and was consumed by her daughter's illness. Even when Natalia began to make real attempts to live her life, too, they did not immediately become successful. Something was missing all the time.
In "Rare Women" she was helped to gain confidence and understanding.
— I knit from merino wool, cashmere and silk. They helped me understand that I am a professional, and my work cannot be cheap. At the same time, I began to react differently to my Dasha's illness: I know what will happen if she falls, and I know what to do about it. And this is also a lot of work by people who help," Natalia sums up.
Переведено сервисом «Яндекс Переводчик»
