Mark
Kultyshev

Mark was born and grew up in Moscow, but now lives in Uzbekistan with his parents. The boy was a healthy child, developing according to his age, but at 7 months of age he rapidly developed West syndrome, one of the most severe forms of pediatric epilepsy.

In two months, Mark went from a perfectly healthy child to an immobile baby with a blank stare. He lost all physical and mental skills and could not even chew food. The disease progressed. In time, Mark stopped seeing and hearing.
At 11 months old, the boy was able to undergo a month-long course of hormonal pulse therapy. This helped to stop the regression, but unfortunately not the epilepsy. Seizures continued to torment Mark. The parents had a genetic analysis done.

It became known that Mark has a rare genetic disease - Alkurai-Kuchinskas syndrome of mild phenotype. It is still not fully understood, but the baby still had a chance to be saved.

In early 2021, when Mark was 1 year old, he found himself in the hands of a specialist we know - Dr. Russey at the clinic Teknon  (Spain, Barcelona), who has already helped many of our patients.
Using a special technique, the doctor customized Mark's medication.

After the first drug emotions appeared, Mark began to swallow food and water normally.

After the second and third medications were administered, his vision partially returned by age two, and Mark learned to sit up and chew on his own.

Over two years of treatment, the baby has gotten much better, but the epilepsy focus, which causes a discharge every 8 seconds in Mark's head, keeps him from developing.

Thanks to a huge number of kind people and one wizard, we were able to close Mark's collection and give him a chance at a healthy future.

On February 19, 2024, Mark was admitted to the clinic Teknon.

The first stage of treatment - surgery through invasive stereo EEG monitoring with navigation - was performed on February 21. Six electrodes were inserted into the baby's cerebral cortex and connected to round-the-clock monitoring, thanks to which it was possible to determine the exact location of episodes and their distribution within 6 days.
There were 2 small foci on the left (they were cauterized with the same electrodes) and 2 large foci on the right.

On February 28, the second stage of treatment took place. The surgery was successful, all planned epi foci were removed.

On July 4, 2024, there was a consultation with Dr. Russey. After reviewing the results of the EEG performed on Mark the day before, he said everything was fine. He sees no epileptic activity. A repeat EEG is scheduled for September 2024.

Epilepsy attacks no longer bother the boy, and his development - does not stand still.

Friends, thank you so much for the responsiveness of your hearts.

May all good things return to you for sure!