Parents of children with Duchenne Muscular Dystrophy (DMD) are addressing the government, the Patriarchate, the Public Defender, and the public with a joint statement. The organization “Together Against Duchenne Muscular Dystrophy” is demanding a meeting with Prime Minister Irakli Kobakhidze and effective steps from the state.
We offer the parents’ statement in full:
“Greetings.
Duchenne Muscular Dystrophy is a fatal disease that causes muscle wasting and death at an early age. There are approximately 100 children registered with Duchenne in Georgia. Due to the lack of proper medication and treatment, 1, 2, or 3 children die from this disease in Georgia every year.
We, the parents of children with Duchenne Muscular Dystrophy, have been requesting a meeting with Prime Minister Irakli Kobakhidze for over three months. Our demand is for the state to import essential medications and fund periodic medical examinations. Unfortunately, the country’s highest-ranking official is avoiding a meeting with us.
As a sign of protest, we parents decided to set up tents in front of the Government Administration for a 24-hour protest. However, we received a shocking response from the Ministry of Internal Affairs, stating that we do not have the right to set up tents in the square and protest around the clock. Apparently, as parents of terminally ill Georgian children, our protest must not ‘excessively disturb’ pedestrians, enterprises, institutions, and organizations.
We would like to remind you that setting up tents at rallies has never been prohibited in Georgia, including during those ‘bloody 9 years’ that the government reminds us of every minute.
We call upon the government: do not play with children’s lives. Every day of your inaction is a step toward these children’s deaths. Do not let the years of your governance become the years of children’s deaths.
We appeal to the Patriarchate of Georgia: please mediate for us with the Prime Minister so that he meets us, hears our problems, and takes measures to preserve the lives of these children.
We appeal to the Public Defender: protect the most precious right that exists in this country—the right to life for 100 children. Also, protect our right to assembly and expression, and stand by us so that we can make the public and the state aware of our problem.
We appeal to the public: support us, and together let us save the health and lives of these children.”
According to the parents, attempts to establish communication with the Prime Minister over the last three months have been unsuccessful, forcing them to resort to extreme forms of protest.
