Parents of children with Duchenne muscular dystrophy call for urgent state action in Georgia

Parents of children diagnosed with Duchenne muscular dystrophy in Georgia have issued a public appeal to the government, the Church, the Public Defender, and wider society, warning of what they described as a worsening health crisis.

In a statement released by the advocacy group Together Against Duchenne Muscular Dystrophy on Tuesday, parents said the condition - a severe genetic disorder that causes progressive muscle degeneration - remains fatal without proper treatment. 

They estimated that around 100 children in Georgia are currently living with the disease, adding that one to three children die each year due to the lack of access to appropriate medication and care.

The group said it has been seeking a meeting for more than three months with Prime Minister Irakli Kobakhidze, calling for the state to ensure the import of essential medicines and to fund regular diagnostic monitoring. According to the parents, their requests have so far gone unanswered.

In protest, families said they planned to set up tents and hold a 24-hour demonstration outside the government administration building. However, they reported being informed by the Ministry of Internal Affairs of Georgia that they would not be permitted to carry out a continuous protest involving tents in the designated area.

The parents argued that such restrictions were unjustified, noting that the use of tents during protests had not historically been prohibited in Georgia. They warned that delays in government response could have life-threatening consequences for affected children.

The appeal also called on the Georgian Orthodox Church to mediate with the government, urging it to facilitate a meeting with the prime minister. In addition, the group has appealed to the Public Defender of Georgia to protect both the children’s right to life and the families’ right to peaceful assembly and expression.

Addressing the public, the parents urged broader support, saying collective action was needed to improve access to life-saving treatment and to prevent further loss of life.