YEGOR (6) Moscow, russia

Bio by Yegor's parents

Yegor was born on time. Everything was just fine from the first cry. At 1 year old, Yegor started walking. Yegorushka was a very bright and curious boy. Yegor even went to daycare, and he loved it.
At 18 months old, Yegor had a high fever which caused seizures. A month later, we began to notice that Yegor would roll his eyes up, fell down and after a few seconds get up and act normal. After the fall, there was a slight tremor of the arms and legs. The neurologist diagnosed Yegor with "Cryptogenic focal epilepsy, with rare attacks, resistant to treatment, delayed psycho-speech development, ataxic syndrome". For us, this diagnosis was like a bolt from the sky. Yegor had to take anticonvulsant drugs.

At the age of 2 years and 5 months, Yegor had his first severe epileptic attack. What happened to him is beyond words. It was very scary.After the first one, attacks became recurrent, but in a milder form.

We started looking for clinics and doctors in Moscow. We consulted in several clinics and performed many tests. According to the results of an MRI, Yegor had focal cortical dysplasia of the brain of the left frontal lobe.
At the age of 3, we began to notice a strong lag in Yegor's development. He began to walk unsteadily, skidding to the sides. In just a month, he lost all his skills. Yegor is completely recumbent and speech has disappeared (he can barely hold his head up). We didn't understand what was happening to our child.

In Moscow, we were told that Yegor could be operated on. We were told he will recover after the operation. We passed the pre-surgical examination very quickly. But unfortunately, the operation was denied to us. Then, he was diagnosed with a KCTD7 mutation.

After these words, we found no ground left under our feet. We did not understand what to do next and how to live....

We really want to put our son on his feet, so that he would be a child that can do thing again.
Please help us to help our little Yegorka.