Urgent fundraising for gene therapy against a neurodegenerat

Hello, dear friends.

My daughter, Rymma Makarova, fights for her life every single day, enduring unbearable pain and suffering. Every moment is a battle against a disease that ruthlessly robs her of her childhood.

Rymma was born a healthy, happy girl. Just like any other child, she was learning to walk, speak, name colors, and recognize the alphabet. My husband and I were overjoyed and couldn’t have imagined the nightmare that was about to unfold.

One day, we noticed something was wrong. Her steps became unsteady, as if she couldn’t keep her balance. It was like a drunk person’s walk, but she was just a year old. At the time, we had no idea that this was the beginning of a terrible journey.

Since then, Rymma has been losing all her abilities. Today, at almost six years old, she can no longer walk, stand, hold her back or head. She cannot speak, she can barely see, and she is gradually losing the ability to chew food. Every day is filled with pain, tears, and fear.

This disease is so rare that it took us years to get a diagnosis. And when we finally did, our world collapsed. The diagnosis was like a death sentence: infantile neuroaxonal dystrophy (INAD).

We were told there is no cure. That children with this diagnosis rarely live past 10 years old, losing all their functions along the way. The words of the doctors were cold and devastating, but we couldn’t just give up. We are parents. We must fight.

We found other parents, as desperate as we are. Together, we discovered scientists who are developing a gene therapy that could save our children. This is our only chance. But the cost of this treatment is over €2 million.

We are begging each and every one of you: please help us raise these funds to save our little girl. Time is running out, but we believe that, with your help, Rymma can live. This is more than just a fundraising campaign. This is hope. This is a chance for life.

Every bit of help, every act of kindness, brings us closer to saving her. Please, help us give Rymma the chance to see a world without pain.

With hope and faith,

The Makarov family.