Parents of children with brittle bones urge Health Minister ‘not to break life’
Children with a rare bone disease along with their parents and activists demand the launch of treatment system by the Health Ministry of Ukraine.
The activists break the figures of children in front of the Ministry’s building during the action “Do not break my life.”
The patients diagnosed with the brittle bone syndrome require special treatment. The children with other rare diseases such as achondroplasia, hypochondroplasia, neurofibromatosis, and Rett’s syndrome need special treatment as well.
The parents say they have already sent a number of letters to the Health Ministry of Ukraine, the government, the President, and the commissioners for human rights and children’s rights, but have not received a proper response yet. They ask to include these diseases in the orphan diseases list (amending the Order No. 778). Without this amendment, the doctors refuse to officially treat their children being afraid of assuming such responsibility.
“Almost all of our hospitals refuse to treat these children because Ukraine has no protocols, i.e. schemes for treating such patients. In order to approve the treatment protocol, certain diseases should be on the list of rare diseases. It runs to the absurd. In spite of the fact that these five diagnoses are in the Orphanet international database of rare diseases, they do not legally exist in Ukraine,” says Olha Stefanyshyna, executive director of the Charitable Foundation “Patients of Ukraine.”
The children with a rare bone disease can break a bone following any careless movement – sneezing or even heaviness of a children’s blanket. Toddlers may break bones up to 30 times per year, resulting in the irreversible changes in an organism. They can get a disability if they do not receive proper treatment.
“As of now, I, the mother of an ill child, in fact, am a criminal in this country. There are no treatment protocols, so, I actually treat my child illegally because I want her to live a normal life,” says Liubov Petrova, mother of 4-year old Yaroslava, who have broken legs seven times for 20 months.
During the action, the parents submitted the next letter with the request to amend the Health Ministry Order No. 778 to apply the international treatment protocols to Health Minister of Ukraine Alexander Kvitashvili and Deputy Health Minister Viktor Shafransky, responsible for application of the treatment protocols.