The Government condemns “crystal” children to disability

The Government condemns “crystal” children to disability

“Children-crystals” together with their parents and patient organizations’ activists gathered in front of the Ministry of Health of Ukraine holding an action under the title “Do not break up my life!” Kids whose bones were broken up approximately 30 times in a couple of years, crashed the statuettes of children in front of the Ministry of Health of Ukraine. They tried to demonstrate how easily their bones and lives can be broken due to indifference of officials who condemn them to inevitable disability.

“Crystal” people are patients diagnosed with “osteogenesis imperfecta”, the main feature of which – brittle bones. Moreover, such a treatment is required for other rare diseases, such as achondroplasia, hypochondroplasia, neurofibromatosis and Rett’s syndrome. Within a year and a half parents of children with these diseases have sent a number of letters to the Ministry of Health, the Cabinet of Ministers, the President, and to the Commissioners for Human Rights. All they ask for – is to include the mentioned diseases into the list of rare diseases (amendments to the MoH Decree №778). Patients did not receive an effective response from the Government yet.  Doctors refuse to treat such children and take responsibility until there are treatment protocols approved in the country.

“Almost all of our hospitals refuse to treat these children, because there are no treatment protocols in Ukraine. In order to approve the treatment protocols, the mentioned diseases should be included into the list of rare diseases. It runs to the absurd. Despite the fact that these five diseases are included in the international database of rare diseases – Orphanet, patients themselves still should prove the existence of such rare disorders to the Ukrainian officials!”,says Olga Stefanyshynа, the Executive Director of CF “Patients of Ukraine”. “Before it happens – little “crystals” and their parents stay helpless with their illness, which is cannot to be treated and the Government, which doesn’t allocate money to buy the necessary medicines.”

When a child has osteogenesis imperfecta fractures can occur even due to ordinary activities – sneezing or high weight of child’s blanket. Kids may have up to 30 fractures per year, that leads to irreversible changes in the body. Without treatment these children are condemned to a life in a wheelchair, unbearable pain and life-long care.

While bisphosphonates are used all over the world to treat “crystals”, parents of these children in Ukraine have to treat their kids almost illegally, because treatment protocols don’t exist and the majority of hospitals refuse not only to treat such children but also to diagnose them.

 “Today I, mother of a sick child, in fact, can be called a criminal in this country. There are no treatment protocols, and actually, I treat my child illegally, because I wish her to live a normal life. Each fracture means for us 3 weeks on stretching when a child doesn’t sleep at night because of the terrible pain. Then another 8 weeks in plaster and at least one month of physio. If I don’t treat my child – she will become disabled and bedridden! But officials in the Ministry of Health don’t care”,claims Lyubov Petrova, mother of a 4 year old girl who has already broken her leg 7 times in last 20 months.

During the action parents of these children handed over the Minister of Health         Alexander Kvitashvili and the Deputy Minister of Health Viktor Shafranskiy who is responsible for the formation of treatment protocols, a letter with the request to amend the Decree of the Ministry of Health №778, which will allow to treat “crystal” children with the drugs that are used all over the world.

“Today I came here in a wheelchair to support these children. Wheelchair – is the thing which awaits these children in a few years if they are not treated properly. I want officials to look at me once again and realize that they condemn “crystal” children just because they don’t pay attention to them”,says Svetlana Patra who lives 34 years with osteogenesis imperfecta in Ukraine.

“Crystal” children can live a full life only on condition that they receive the necessary treatment.

Contact person: Aliona Romaniuk 093 72 10 800, 050 335 53 01

Contact person: Aliona Romaniuk 093 72 10 800, 050 335 53 01 

 

Leave a Reply

Your email address will not be published. Required fields are marked *