Unbiased Inheritable Disease Program

Birds for Sofia is opening a collection for Varvara Mayer’s annual course of vital treatment.

Varyusha Mayer, 5, is the only girl in Ukraine with a severe genetic defect of SLC6A1. Due to the breakdown in biochemical brain processes and daily numerous epileptic seizures, her neural connections were destroyed, and many skills, knowledge, and abilities were lost in the first years of life. She was getting worse every day.

In September 2022, thanks to Birds for Sofia and the kind help of donors, the Mayer family purchased a one-year course of Ravicti, the only medicine in the entire world able to help Varvara fight her rare disease.

Today, after completing the first stage of treatment, Varyusha shows to have no epileptic seizures, her brain function has improved significantly, and she’s not suffering from constant headaches and muscle dystonia. Her memory skills have also improved drastically, so that she has gained an opportunity to remember and learn new information. She can live the life of a normal healthy child, enjoy simple but also important milestones in her development. 

Given the outstanding results, we’re once again turning to you for help in purchasing Varvara’s annual supply of Ravicti. The cost of the full course of treatment is €38,526, and we hope that together we can make this miracle happen for Varya again this year.

Thank you in advance for your help and support of Varyusha in her fight against a serious genetic disease.