How Ksyusha with SMA ended up in an Orphanage with a living mother? Here's what the mother herself says

Since the announcement, more than half has already been collected — it seems such fundraising efforts have never progressed so quickly. The possible reason lies in the story of the girl, who has been in an Orphanage for over a year. Ksyusha has a mother; she has not been deprived of parental rights and personally wrote an application for her daughter to be admitted to the state institution. Onliner.by managed to contact her and ask questions that concern thousands of people.

What is known about the girl's family

The girl's mother's name is Nina — this was known since the launch of the fundraiser from the published birth certificate. Comments on posts stated that she also has other children, and before this, she had already tried to raise money for treatment.

Thanks to volunteers, journalists were able to personally contact Nina. She immediately agreed to speak with journalists and answer important questions.

It turned out that the woman is 29 years old, works as a milking machine operator, and lives in an agrotown approximately 100 km from Mogilev.

Nina has four children — three daughters and a young son. Currently, all children do not live with their mother, but more on that later.

Павялічыць

In the photo on the left — Ksyusha with her mother

Ksyusha is the Belarusian woman's third child. At the time of her first pregnancy, the woman said, she was only 17 years old. Upon learning of her situation, the young man broke off the relationship. While in her 9th month, Nina met a man — he later became her official husband.

— He knew the child wasn't his, but he still registered the daughter as his own. Five months later, I found out I was pregnant with a second daughter.

The marriage fell apart. Some time later, at work, Nina met Anatol. The older daughters even started calling the man dad. Later, two more children were born from this relationship — Ksyusha and her younger brother.

"Get up, you should be walking on your own two feet already"

Nina quickly noticed that something was wrong with Ksyusha — her parenting experience told her so.

— Closer to 11 months, we became alarmed — Ksyusha wasn't getting to her feet, couldn't get up or sit down on her own, only rolled from side to side. We went to the regional children's hospital in Mogilev, where she was given a preliminary diagnosis of 'hip dysplasia'. In January, we were in rehabilitation, and they sent us for a genetic test. Then we went to Minsk, where SMA was confirmed.

Nina immediately told Ksyusha's father about the diagnosis. According to the mother, his reaction caused her to have a breakdown.

— Somehow he told Ksyusha: 'Why are you lying there, get up, you should be walking on your own two feet already.' I didn't even quite understand how it was said — jokingly or...

Павялічыць

At the same time, Nina found out she was pregnant for the fourth time. There was a 25% chance the son could be born with the same diagnosis — to rule out risks, a genetic test was performed. The result showed that the child would be a carrier of the 'broken' gene, but the boy himself would not develop the disease.

Where is the girl's father now? One of the posts stated that the man is no longer alive.

— Ksyusha doesn't have a father — he [committed suicide] almost two years ago. That was when our daughter was diagnosed. We were together for three years, lived normally. Yes, we argued, yes, there were scandals — but that happens in every family. He didn't drink, he worked — everything as it should be. The only thing was he accumulated debts, plus Ksyusha's diagnosis…

All this time, Nina's mother also lives with Nina and her family — in housing provided by the collective farm. According to Nina, her mother has a specific health condition. Journalists do not have the right to disclose the details of the diagnosis and intentionally omit specifics.

As the woman recounts, her mother helped raise the grandchildren whenever possible — took them to the bus stop and met them after school, could do homework with them — in short, she was on standby while Nina took care of the younger ones. But it was not possible to leave the children with their grandmother for long — the woman explains this restriction by her mother's specific health condition.

Павялічыць

— What did you know about Ksyusha's illness?

— They told me, and I read about it somewhere. Understand that I encountered this for the first time — I didn't even understand how or what to do. Doctors said it was a dangerous disease. But the thing is, I'm not a medic: I won't do the necessary massage, physical therapy (LFC), somewhere I'll be more gentle — because I'm a mother.

— Were you told about the treatment and the drug costing almost $2 million?

— Yes, yes, they told me everything. I opened a charity account in the bank — in Belarusian rubles. Then they helped me post a photo with the details on 'Odnoklassniki'.

— Did you manage to raise any money?

— My aunt and some other relatives put money into the account — the amount wasn't very large. Then I posted videos and photos, documents on TikTok, and also wrote on Instagram that I was looking for volunteers. But people were scared — they thought it was fraud, they also called and wrote.

As Nina said, she also went to rehabilitation with Ksyusha. During this time, the children were under the supervision of doctors in the local hospital's children's ward — there was no one else to leave them with.

— The only thing is, I wasn't with Ksyusha for her last rehabilitation last year, because I had an infant son. He wasn't even a year old yet, and there was no one to leave him with. So Ksyusha stayed with a nurse.

"The decision was not easy for me"

Nina confirms: since January 2025, Ksyusha has been in the Mogilev Orphanage. The girl was placed there based on her mother's application.

Павялічыць

— Honestly, [making this decision] was hard for me. Our specialists also told me about this diagnosis... But since I have two older children and a young son, it wasn't always possible to give Ksyusha the same massage and physical therapy. Yes, I changed diapers, did everything as I should, kept an eye on that. But massages, physical therapy, plus fine motor skills... because I had an infant plus the older ones — you can't just say: 'Go play,' they also need attention.

Therefore, the decision was not easy for me. I understood that Ksyusha would be under the supervision of doctors and specialists there.

— Nina, did someone suggest this option to you, how did you find out about it?

— Regarding palliative care, our district pediatrician suggested it to me — specifically for a year. If it were for half a year, it would be paid. Ksyusha receives disability and survivor's pensions, so even if it were paid, it could have been afforded. It turned out to be a social respite.

— Did you consult with anyone? Your mother or a friend?

— I spoke with pediatricians who know more about this diagnosis than I do. They told me there would be specialized care and so on.

— When you placed Ksyusha there, did you set any deadlines for yourself?

— I knew it was only for a year and Ksyusha would be home once the youngest grew up.

Nina emphasizes: it was decided to transfer Ksyusha specifically "to the palliative care unit, which is located at a specialized Children's Home for children with mental and central nervous system disorders".

— This is not just an Orphanage, but a specialized one.

— How did you tell Ksyusha about this?

— To be honest, I didn't say a word to Ksyusha. We were taken to palliative care by ambulance along with a nurse from the hospital. By then, my application had already been written, all documents [collected]. Yes, I was with Ksyusha, but leaving there was very difficult for me... Ksyusha had a tantrum, and so did I... This happens every time I visit her.

The girl's tantrum on that first day, her mother believes, happened for an understandable reason: Ksyusha didn't want her mother to leave.

— In principle, I also didn't want her to stay there. Yes, we visited her — with the eldest, sometimes with the middle daughter too. The only exception was without the son, as he was too young.

— How did Ksyusha react to your arrival?

— She was joyful, content, told me everything, showed me things. I filmed videos, took photos — I have all of it.

When I had to leave — I had a tantrum, she had one too... All of this is very, very difficult and hard.

"At the moment, I am an obligated person"

Nina explains that she only needed a 'social respite' for Ksyusha.

But, as it turned out, since October 2025, all the children have been living separately from their mother.

— The eldest daughter and youngest son are under temporary guardianship with another family. The middle daughter is with her biological father, and Ksyusha is in the Children's Home. I see the eldest at school, and my son is brought to the Social Pedagogical Center (SPC) — he recognizes me, calls me mom, plays.

Currently, Nina's eldest daughter is 10 years old, the middle one is 9, Ksyusha is 3.5, and her son is 1.5 years old. The woman assures that she maintains contact with all of them.

— At the moment, I am an 'obligated person'. In fact — children's benefits were used irrationally, the house wasn't always clean, food was in minimal quantities...

— What's the story behind the irrational use of benefits?

— Honestly, I have no idea. I don't drink; the only things I bought for myself with the children's benefits were cigarettes, coffee, and personal hygiene items.

— Why were questions raised about you in the first place?

— To be honest, I truly have no idea. I was in a relationship with a man who drank and came to my house intoxicated. Perhaps someone called, or something else... A commission came to my house — I wasn't home, they called me at work. When they arrived, my mother opened the door — I wasn't allowed to leave the children with her (as a reminder, we're talking about the woman's specific health condition).

— What do you need to do to get your children back?

— Now almost everything is done; all that's left is to connect the gas stove and fix the wiring.

— Do you intend to get all of them back?

— I think the children will be home next month already. And Ksyusha too. The only thing is, the middle daughter will be with her father until September; then I plan to take her back too. Her father is determined not to return her to me. He said, 'What if such a situation happens again, so I don't have to drive 10 times to pick up the child.'

According to Nina, representatives of the guardianship authorities visited her on March 9. That's when recommendations were given regarding replacing the gas stove and wiring. The question of possible deprivation of parental rights, the mother assures, is not being raised.

— When did you last see Ksyusha?

— March 7. Then visits were prohibited due to illness (Ksyusha was hospitalized with pneumonia).

— And before that, how often did you visit?

— Always varied. Sometimes once a month, sometimes twice. For certain reasons, I can work a month or two without days off. As I was told — 'You need to earn a reputation.' But for me, the child is the main thing.

— How much time do you manage to spend with Ksyusha?

— Always varied, it all depends on how long I've booked the shuttle (the specialized Children's Home is in Mogilev, while Nina lives in an agrotown about an hour's drive away). If I have a day off, I can sit there all day. We talk, we play. Once I was with my sister and my niece — the girl was running around, it was unusual for her that Ksyusha was in a wheelchair. She kept asking to run together.

As volunteers told us, Ksyusha currently doesn't walk or crawl, although she can move her legs.

— Does Ksyusha ask questions — why she is there and you are not by her side?

— No, she always says that her mom has arrived. She sits content, her eyes shining.

— What does she like when you bring it?

— Soft toys, fruit and vegetable purees... But generally, all of that is somewhat irrelevant to her. The main thing is for mom to visit. She won't even let me go to the bathroom. In that case, I leave her my phone — she knows I won't leave without it.

Accounts are in the mother's name. How and who controls the fundraising?

As volunteers later explained, one of the two Instagram accounts collecting for Ksyusha was previously Nina's personal page. Another (currently active) profile was a backup for the fundraising of Katya Vinogradova (also a child with SMA type 2, fundraising for her treatment was closed in January 2026) — which is why 'reels' still contained videos with that girl and her mother, Oksana.

A week ago, volunteers published a post on the fundraising Instagram account, answering frequently asked questions.

Many are asking why the child was left without parents and how it happened that the accounts for Ksyusha's treatment are opened in the mother's name.

Павялічыць

Here's how volunteers respond to this:

«This is a real legal trap we've encountered: 1. Legal Status: Ksyusha's mother has not been deprived of parental rights. By law, she remains the child's sole legal representative. 2. Prohibition for Orphanages: State institutions (guardianship, orphanages) do not have the right to open charity accounts in their name and conduct multi-million fundraising for gene therapy (Zolgensma injection). 3. The Only Way Out: By law, only the child's legal representative can open such an account. There simply is no other way. If we wait for court proceedings to deprive rights and appoint a new guardian, Ksyusha simply won't live to receive the injection.»

In such a case, how will the targeted use of funds be controlled?

Volunteers also publicly answered this question: «1. Full access to reports: We have an agreement with the mother and regularly receive bank statements. 2. Daily transparency: We publish strict financial reports and screenshots of receipts on our social media. You can always track the amount collected. 3. Targeted transfer: Not a single kopeck of the collected funds will go towards personal needs. As soon as the required amount is collected (or if a large foundation joins the fundraiser), the money will be transferred strictly according to the invoice directly to the medical clinic or the drug manufacturer.»

Павялічыць

Screenshots from volunteers' video — Ksyusha undergoing treatment for pneumonia

An important point: Nina does not receive the codes for international transfers — a volunteer's phone number is indicated in the contacts. Without them, as we were explained, the mother will not be able to withdraw money, and the volunteers will not be able to receive them without the passport and application of the person in whose name the account is opened.

In a conversation with the journalist, Nina specifically emphasized:

— I am not an enemy to my child's health. On the contrary, I will be happy and grateful to everyone who helps with this fundraiser.

— Have you read the comments left under the posts?

— I have. You know... I want to write a reply, but somehow I can't bring myself to. They compare me to a cuckoo and an animal. I can only say one thing: I did not abandon Ksyusha and I am not going to. Circumstances simply turned out this way.

Information about helping Ksyusha at the link

• 1
• 0
• 1
• 5
• 0
• 20
• 2
• 0