Parents of children with Duchenne muscular dystrophy have sent an open letter to the founder of the ruling Georgian Dream party, Bidzina Ivanishvili, stating that they have been unsuccessfully trying to secure access to modern medicines and treatment for their children from the state for two years.
In the appeal, they ask Ivanishvili to take an interest in the plight of children with Duchenne muscular dystrophy, listen to the parents’ voices, and help facilitate decisions that will give our children a chance at life, movement, and a better future.
The authors of the letter note that they have repeatedly appealed to the Ministry of Health of Georgia and other agencies, but, according to them, no tangible decisions have been made.
“Our demand is simple and fair—access to modern medicines and treatments that are already used in developed countries around the world, allowing us to slow the progression of the disease and improve quality of life,” the letter reads.
The parents also state that a multidisciplinary medical team for patients with Duchenne muscular dystrophy has still not been established. According to them, during this time, the condition of some children has deteriorated, and some patients have died.
They also report that they have been peacefully standing outside the government chancellery building for more than 41 days, waiting for a reaction from the authorities; however, as the authors claim, not a single high-ranking official has met with them or presented a plan of assistance.
They emphasize that every lost opportunity is critical for their children.
“Every day, our children lose what healthy children have naturally—the ability to run, play, move independently, and live a full life.”
The appeal is timed to June 1—International Children’s Day. The authors hope that it will not go unanswered.
“We are not asking for privileges. We are asking the state to ensure the implementation of modern standards of care for Duchenne muscular dystrophy, including access to modern medicines,” the letter says.
“We are not asking for the impossible. We are asking for a chance—a chance so that children with Duchenne muscular dystrophy in Georgia also have hope,” the appeal emphasizes.
Notably, parents of children with Duchenne muscular dystrophy are spending their 42nd consecutive night outside the government chancellery building, demanding the provision of the necessary treatment.