The story of Zhana Chokheli
My son Dachi was born 4th of June 2020. On third day of life Dachi started seizing, he couldn’t eat and was sleeping all day long. Till he was 9 days old doctors couldn’t recognize that he had seizures. We were told that Dachi had epilepsy. Eventually he spent 3 month in NICU without any results. They couldn’t find the reason of his seizures. His seizures became longer and sevier. He had about 100+seizures per day about 2 minutes long each. When Dachi was 3 month old we decided to visit another doctor and after 5 minutes of my story about Dachi’s condition he said that it very alike he had SCN2A GENE mutation. He said to do genetic test (we weren’t suggested that before). After 4 weeks we got the test results and SCN2A mutation was confirmed. By that time Dachi was already seizure free. The new doctor started the right treatment and from 100+seizures Dachi had 0 after 4 weeks of treatment. He is now seizure free more than a year.
Unfortunately we aren’t so secsessfull with development, he is very delayed.
There are about 1000 cases of scn2a in the world, but each of them are very different.
For now there is no cure for Dachi.
Once a friend of mine asked how had Dachi changed my life. I never thought about that before and find out that none of my family members were the same. Dachi changed us all in a better way. I couldn’t imagine that I could love someone that much. Or be thankful to God for every day without seizures. Dachis smiles give me so much power to fight for the cure, fight for the best future for my love.
He is a real gift from God. I’m so happy that I was chosen to be his mom.