Little Olivia still needs €35,000 for treatment
Three-year-old Olivia Ruseckа has received €220,000 in donations for treatment of a rare genetic disease, but drug costs turned out higher and €35,000 is still needed. The charity Ziedot.lv is urging the public to donate.
The Latvian charity Ziedot.lv is asking the public to help fund treatment for three-year-old Olivia Ruseckа, who still needs €35,000 for a life-saving medicine. Olivia has a rare, progressive genetic disease, and starting therapy depends largely on donors.
What happened
Ziedot.lv began raising funds for Olivia in September. Thanks to donors, €220,000 has been collected so far. However, after the drug manufacturer provided updated information, it emerged that the medicine costs €15,000 more than originally planned. The first dose has already been ordered.
According to the manufacturer, the medicine costs about €510,000 a year. To begin, a reserve covering at least six months is needed, which comes to €255,000. Latvia's National Health Service has granted Olivia an individual drug compensation of €30,000, but this covers only a small share of the therapy's cost.
The illness
In late July, Olivia was diagnosed with type 2 neuronal ceroid lipofuscinosis (CLN2). The disease gradually takes away a child's movement, vision and other vital functions. Doctors have given the family a harsh prognosis: at around four to five years of age children typically start losing acquired skills, around age six movement deteriorates significantly and epileptic seizures become hard to control, and blindness may set in at six to seven. Without specific treatment, life expectancy for children with this diagnosis is about ten years.
The progression can be slowed with the medicine Brineura. It is important to start therapy as early as possible, before the disease causes irreversible damage.
How to donate
Donations can be made on the Ziedot.lv portal at Ziedot.lv/olivijai via internet banking or payment card, or at any bank branch to the Ziedot.lv account, stating the purpose “Palīdzēsim Olīvijai Ruseckai” (“Let’s help Olivia Ruseckа”). Ziedot.lv says it charges no commission or intermediary fees, the entire amount goes to the intended purpose, and administrative costs are not covered from donations.
