Parents of children with Duchenne muscular dystrophy appeal to the government, the Patriarchate and the Public Defender for help

Parents of children with Duchenne muscular dystrophy are appealing to the government, the Patriarchate of Georgia, the Public Defender and the public, stating that without the state funding for necessary medicines and research, the lives of children are in danger every day.

According to the parents, Duchenne muscular dystrophy is a fatal disease that causes progressive muscle wasting at an early age and ultimately death. According to them, about 100 children with this diagnosis are registered in Georgia, and 1 to 3 children die annually due to the lack of proper treatment.

As noted in the statement, parents of children with Duchenne have been demanding a meeting with Prime Minister Irakli Kobakhidze for more than three months. Their main demand is for the state to import necessary medicines and finance periodic research.

The parents say that despite numerous attempts, they have not been able to meet with the Prime Minister and that the highest government official is avoiding communication with them.

As a sign of protest, the parents say that they have decided to set up tents in front of the State Chancellery and hold a 24-hour protest, however, they received a response from the Ministry of Internal Affairs that they do not have the right to place tents in the said area and protest continuously.

“It turns out that the parents of terminally ill Georgian children should not disturb people walking on the streets, enterprises, institutions and organizations excessively with our protest,” the parents say.

According to their assessment, setting up tents at protests has never been prohibited in Georgia and the current government’s position in this regard is unclear.

In their appeal, the parents call on the government to “not play with children’s lives” and state that every day of inaction increases the risk of children’s condition worsening and their lives being lost.

In addition, they ask the Patriarchate of Georgia to intercede with the Prime Minister to meet with them, listen to their problems, and make appropriate decisions.

The parents also appeal to the Public Defender and call on him to protect both the children's right to life, as well as their freedom of assembly and expression.

At the end of the statement, the parents of children with Duchenne call on the public for support and state that with joint efforts it is possible to protect the health and lives of children.

The statement is being released by the organization "Together to Fight Duchenne Muscular Dystrophy".