Family seeks 240,000 euros to slow rare disease in Latvian girl
Saturday 19th September 2026 on 19:45 in
Latvia
The family of Olīvija, a girl from Jelgava, is seeking 240,000 euros to begin treatment that could slow the progression of a rare genetic disease, Latvian public broadcaster LSM reported. The medicine is not included on Latvia’s list of reimbursed drugs, and charity Ziedot.lv has launched a fundraising campaign.
Olīvija is the only child in Latvia diagnosed with the condition. Her illness is progressing, and she can no longer climb stairs. She is often accompanied by her mother or twin brothers.
“Genetic tests showed which gene she is missing and which causes the disease. The cerebellum is deteriorating and atrophying. It is becoming difficult for her to walk and speak,” Olīvija’s mother, Karīna Rusecka, said.
Doctors have told the family that it may be a year before Olīvija reaches a condition in which she is bedridden.
“She will not be able to walk. Her reflexes will disappear. The child will become completely blind. And then, if there is no treatment, everything will depend on how well I can care for her. On average, she may live to the age of 10,” Rusecka said.
The medicine prescribed by a medical council cannot cure the disease, but it can slow its progression.
“It is important to understand that this medicine does not cure the disease, but stops its progression. Yes, it will continue to progress, but not as quickly,” Rusecka said.
After learning that treatment was available but unaffordable, Rusecka wrote to several officials, including the president. She said the responses referred her to the Ministry of Health, which told her it would monitor the situation, but she received no further response.
Ziedot.lv has begun collecting donations for Olīvija, while also urging continued talks with the Ministry of Health so the state will cover the cost of her medicine.
“Between her life and her future stands money. If each of us donates even a little, we can give her mother and Olīvija hope,” Ziedot.lv head Rūta Dimanta said.
According to information from the medicine’s manufacturer, the treatment costs about 480,000 euros per year. The initial six-month supply requires 240,000 euros.
“If there is a possibility of extending my daughter’s life, I want to do it. We must not give up. Who else will do all this in my place? No one,” Rusecka said.