How much would we have to pay to be able to spend one more day with our child? For three-year-old Olīvija and her mum, this is a question with a very harsh answer - at least 240,000 euros is needed to begin the necessary treatment.
Olīvija’s mum only found out about her extremely rare and serious diagnosis recently – at the very end of July. Until then, the little girl had been suffering from epileptic seizures and a gradual loss of speech and motor skills. However, it was unclear what was causing this and how the child could be helped. However, at the end of July, the test results came back, revealing that Olīvija has type 2 cerebral lipofuscinosis (CLN2). During the consultation, the doctors outlined the grim progression of the disease. Around the age of 4–5, children usually lose their ability to function independently; by around 6 years of age, gross motor skills are lost and epileptic seizures become uncontrollable; and blindness sets in at 6–7 years of age. Without specific treatment, children with this condition live for an average of 10 years.
At the same time, doctors say that the progression of the disease can be delayed if treatment with the drug Brineura is started as soon as possible. However, this medicine is not included on the list of reimbursable medicines or under the reimbursement scheme for medicines intended for the treatment of rare diseases. It must be taken every other week and this must be continued for the rest of the patient’s life. Doctors have the necessary skills and knowledge to ensure access to this treatment and the ongoing administration of the medicine. At present, the main barrier to treatment is precisely the availability and cost of the medicine.
According to information provided by the drug manufacturers, the annual cost of the medicine is approximately 480,000 euros. To start with, a supply to last at least six months is required, amounting to a total of 240,000 euros.
Doctors have undertaken to liaise with the drug manufacturer regarding ways to reduce the cost of the medicine, to provide the necessary training, and to explore options for including this medicine in the state-funded list of medicines for rare diseases.
Unfortunately, Olīvija does not have that much time to wait. Every day is a struggle for the chance to walk, to see, to play with her mum and big brothers, and simply to be together.
Let’s give Olīvija and her family the chance to spend as much time together as possible!
The Project is placed online on: 15.09.2026
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