Solomija’s Story

How did you feel when your friend received a diagnosis of GM1?

Solomija was my classmate. Until she was 14, everyone thought she had some form of myopathy and heart problems, but in 2008 she was diagnosed with GM1 gangliosidosis. For her parents, for us and for her, it was a shock.

What was the impact of GM1 on your friend?

For Solomija, this was the destruction of the illusion of a complete recovery. She was waiting for therapy to appear, inspired by the example of diseases for which therapy exists (Gaucher disease, mucopolysaccharidosis, Fabry disease, etc.), but she understood that gene therapy does not cure, but only stops the disease. When she realized that she was dying, she accepted it with dignity, like a Bulgarian. On the outside, Soli was beautiful, and she was beautiful in her soul, but her body was being destroyed, the disease had especially abused her leg muscles and heart.

How dID GM1 impact her family and friends?

Soli was very close to my family, her diagnosis, and her death a few years later, were a great loss for us.

What WAs the hardest part of being a GM1 caregiver?

Soli’s mother says that the hardest moment was when, in response to her assurances that everything would be fine, Soli responded, “Mom, don’t lie. I read on the Internet how this will end!”

What do you wish people understood more about rare diseases?

It is hard, the end of this disease is certain. Soli knew that there would be no therapy in the near future, she knew that she would die, but she treated it as a battle. She was inspired by Hristo Botev, Vasil Levski, Olimpiy Panov and other Bulgarians who fought for their homeland. Her character was like theirs: warlike, Bulgarian.

What doIf we could tell people just one thing about GM1 gangliosidosis, what would it be?

This is a prison disease. It paralyzes, it takes away the health of all organs, everything gets worse, only the mind is alive.

Why should people support the Cure GM1 Foundation and rare disease research?

Because it can affect anyone, just like it affected this ordinary Bulgarian girl.

Your support can help families like ours find hope and advance research toward a cure for GM1 gangliosidosis. To learn more about how you can help, please visit the Take Action page or Donate here.