“I can’t be cured, but I can be loved”: how a 21-year-old girl with SMA lives

On the tenth day after birth, Dasha developed pneumonia with pulmonary edema. “They barely had time to pump the baby,” Dasha’s mother Margarita recalls with trembling. “A minute later, and it would have ended in tears.”

The girl grew and developed like other children, with a few exceptions. Sometimes Dasha could trip and fall out of nowhere; the little girl couldn’t play in the sandbox with other children because she didn’t know how to squat. But the family believed that these were just temporary problems that would be resolved very soon. It turned out that these were warning signs of a serious illness.

“On one of the mornings in kindergarten, Dasha had to jump like a rabbit. And she couldn’t. We went to the doctor, who diagnosed him with dysplasia, a structural disorder of body tissues,” recalls Margarita. The girl took a first test for spinal muscular atrophy at the age of four, but the result came back negative. Only one doctor ventured to diagnose SMA not associated with the gene in a child. “Interesting case. I have never seen anything like this before, ”Margarita recalls the doctor’s words.

A series of strange diagnoses, however, did not stop the girl from attending a mainstream school. Dasha remembers that on the first day of class, the teacher introduced her separately to the class and talked about her health problems. After that, all her classmates moved away from her. “I felt like a black sheep. She did everything she could to get attention. She gave me dolls and stickers. And yet I didn’t exist for them,” says Dasha.

The teachers did not treat the special schoolgirl any better. Some of them were angry because Dasha ignored the lines and cells in her notebooks: the girl could start writing at the bottom of the page, without suspecting that she was doing something wrong. Dasha considers geography to be her least favorite subject, because there she had to find different points on maps. But she couldn’t do it because she suffered from dysgraphia – a disorder of written speech caused by brain development. But no one knew that then.

Every year it became more and more difficult for the girl to walk, so periodically at school she needed help going to the toilet. Sometimes the teacher could not leave the class to help Dasha, and the girl turned to her classmates. But they just laughed in response.

At the age of nine, Dasha was transferred to a reform school. The following year, the girl, tired of asking others for help in moving, asked her mother to buy a stroller.

Over time, the girl began to have new health problems: her vision deteriorated, it became more difficult to breathe, and coughing attacks became more frequent. “When Dasha turned 17, we went to Kurgan to treat her foot. There, the council concluded that Dasha breathes only through the top of her lungs and that she urgently needs a cougher with non-invasive ventilation, and advised her to write “The House at the Lighthouse”. And the foundation helped us a lot by providing expensive equipment,” says Margarita.

After Dasha became a patient at Children’s Hospice, her life began to change. If earlier the girl’s family only allowed themselves to have fun, take walks and sometimes go to the regional theater, now Dasha no longer has time to remember what adventures await her next week. “Here, every month there is a camp, or wheelchair and motorcycle races, or classes in a theater studio. This week we will fly by helicopter. Our life has never been so eventful, ”says Dasha’s mother with gratitude.

“I am a creative humanist,” 21-year-old Dasha describes herself briefly. After school, she didn’t want to go anywhere due to the lack of a disability-friendly environment at the universities she liked, so the girl became interested in writing and drawing. Dasha’s drawings were even sent to an exhibition at the House of Artists, where she won the grand prize, and her notes from the blog were collected into a book and printed in a small edition.

Recently, the girl began to write virgin poetry – she was inspired by the French singer and actress Edith Piaf. Without exaggeration, Dasha calls her muse and friend of the heart. To get closer to her mentally, the young girl writes letters and poems to Edith. At the same time, Dasha began to write her second, as the girl says, a full-fledged book. He hasn’t revealed the plot details yet and asks to wait.

One day a real miracle happened to Dasha. She searched the Internet for those who knew Edith Piaf personally and found them. 82-year-old French singer Jacqueline Boyer responded to Dasha in personal messages and invited her to visit her in France. Now the girl dreams of traveling abroad and will learn French.

The only thing that worries Dasha is her condition. Every day the girl gets tired more and more often. Despite this, Dasha does not give up and constantly encourages herself mentally. “Yes, I cannot be cured, but I can be loved and supported,” Dasha says with a smile.

Support Dasha and other hospice patients: donate to website “Houses with lighthouse” or send an SMS to the short number 1200 with the word “Participation” and the donation amount, for example “Participation 500”.

Text: Elvira Asmakiyan