The Rebeca Faith-Hope-Love Association launched the public campaign "We ask Romania to take home the children!", An initiative by which parents of children with Batten disease request the Ministry of Health and the National Insurance House Health to introduce, as a matter of urgency, the treatment for this condition on the list of compensated medicines.
On June 9, at 22:00, the Government of Romania, the Parliament Palace, the Cotroceni Palace and the fountains in the center of the capital were illuminated in turquoise, the color of the Batten disease.
Through this initiative, the Rebeca Faith-Hope-Love Association wishes to draw attention to the need for free treatment in the country, even on the day of children with Batten disease.
Batten's disease leaves children without childhood and quickly extinguishes their lives. It can not be cured, but its evolution can be stopped by a treatment that costs 600,000 euros per year. Parents with these children fled the country to desperately seek help. Among them are Rebecca, the girl in a study in Germany.
"For two years we have been staying in a hotel room in Hamburg. We have no friends, Rebeca has no one to play with, does not understand the language. We tried to take her to kindergarten, but it was impossible. She was crying every day. We are in a study in Germany that ends next year. From that point on, if treatment is not settled in Romania, we can not get treatment unless we move to Germany and become residents, "says Rebecca's mother, Adnana Cotolea.
"Treatment is already approved in 10 countries across Europe. It is necessary, according to Romanian legislation, to be approved in 14 states for unconditional settlement. For her and for us, every moment is important. We can not wait any longer. Without treatment, the disease would advance rapidly. We can not afford to wait for bureaucracy, "says Father Rebecca, Răzvan Cotolea.
At Alexandru Obregia Hospital there is already a section where these children can be treated, and the medical staff has been trained abroad. Everything is ready for taking the patients. Missing but one signature: the one from CNAS!
"We believe that in Romania there would be about 40 patients with this disease. Our team is ready to inject Brienura (n.n. – the substance that is injected into the brain). It has been proven to one of our patients in the treatment abroad that he has not lost gray matter. If treatment is not administered, over time, after 4 years of age, speech is lost. Between 8 and 12 years there is death of these children. Children benefit from the safety of the medicine. The section is ready, we doctors, we're ready. We can start! The team at Obregia Hospital consists of Dr. Diana Bârcă, I (n.n. dr. Dana Craiu) and nurses Silvia Todică and Paula Constantinescu. We all went and trained abroad, in Germany and Italy. We are currently waiting for the latest approvals from the National Insurance House, ANMDM approved the use of this medicine, "said Professor Dana Craiu, head of the Department of Pediatric Neurology at Alexandru Obregia Hospital.