The organization ‘Partnership for Human Rights’ (PHR) says Beka Shonia, a patient with Duchenne muscular dystrophy, addressed the Court of Appeal on July 21, speaking about his need for vital medical services.
PHR said the case concerns Shonia’s request for access to a breathing machine and home-based medical services.
Shonia, who has Duchenne muscular dystrophy, has been unable to leave his home for more than five years. PHR says the ventilator purchased by his mother after selling their house needs to be replaced, while medical services secured through civil advocacy by people with Duchenne syndrome and their families remain unavailable to him.
The organization said the Georgian government did not include ventilators or home medical services for Duchenne patients with limited mobility when amending the State Health Protection Programs on April 22, 2026.
Shonia appealed to the court, seeking protection of his rights and access to necessary services.
At the July 21 hearing, Shonia also appealed for services for other people living with Duchenne muscular dystrophy.
“I hope the judge heard my voice. I spoke in fragments because the tracheostomy makes it difficult to speak, but I wanted to say what I had to say: I want other Duchenne children and mothers not to go through what we went through. My mother had to sell her house so I could breathe, and I do not want anyone else to have to do the same. This is worth fighting for, and I hope I achieve a result,” Shonia said after the hearing.
PHR said Shonia’s participation in the legal process demonstrates how people with disabilities can become advocates for human rights and have their voices heard by state institutions.
The organization added that, despite being isolated at home for five years due to a lack of accessible services, Shonia continues to advocate for his own rights and those of other people with disabilities.
“We work to ensure that all children and adults with disabilities receive the services they are entitled to from the state. They should not fear the future, because the state must protect them from current and future risks. Their voices must be clearly heard in this process. They are not asking for charity, but for the state to fulfill its obligation to protect human rights,” Tamara Gabodze, head of PHR, said at the hearing.
PHR said it has already secured a disability lift for Shonia from the state, as well as permission to install an elevator in his residential building.
The Court of Appeal is expected to announce its decision on Shonia’s access to a ventilator and home medical services at a hearing on July 29.
“This will be an important decision not only for Beka, but for all people who, depending on their health condition, need individually tailored, timely, and effective medical services to live with dignity and safety in their own homes,” PHR said.
