The Palace of Parliament, the Cotroceni Palace, the District 2 town hall and the fountains on the central Unirea blvd. will be illuminated in turquoise - the Batten disease colour, on Tuesday, 8 June, from 22:00 hrs., an initiative by which the Rebeca Faith-Hope-Love Association wishes to draw attention upon the rare disease, on the International Batten Disease Awareness Day.
"The Rebeca Faith-Hope-Love Association is announcing the public campaign 'Romania is taking back its children with Batten', an initiative whereby parents of children with Batten's disease announced the approval of the treatment settlement after three years of 'fighting' with the system!" a press release of the Association sent on Monday to AGERPRES, informs.
At the Bucharest "Alexandru Obregia" Hospital is already prepared the section where these children can be treated, and the medical staff has been trained abroad. According to the cited source, everything is ready to take over the patients.
"We believe that in Romania there would be around 40 patients with this disease. Our team is prepared for the injection of Brienura (the substance that is injected into the brain, ed. n.). It's proven on one of our patients, who is being treated abroad, that he hasn't lost any grey substance. If treatment is not given, after the age of 4 years, speech is lost. The death of these children occurs between the ages of 8 and 12. Children are safe to take the medicine. The section is ready, we doctors are ready. We can get started! The team at Obregia Hospital consists of Dr. Diana Barca, myself (Prof. Dana Craiu) and nurses Silvia Todica and Paula Constantinescu. We all went to study abroad, in Germany and Italy," said Dana Craiu, head of the Pediatric Neurology section at Alexandru Obregia Hospital.
Batten's disease cannot be cured, but its evolution can be stopped with this treatment. The parents of these children who left the country to seek help now can return home. Among them are Rebeca's, a little girl in treatment in Germany.
"We are glad that our children will finally be able to be treated in Romania and we have long been waiting for this decision for which we have fought for three years. I would also like to point out that the pressure of patient associations and parents desperate to help their children can change things. We're just waiting to get back home. We are very happy that we have succeeded!" Said Rebeca's mother, Adnana Cotolea, according to the said release.
Palaces of Parliament, Cotroceni, Unirea Blvd fountains, coloured in turquoise to draw attention upon Batten's disease
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