{"id":357,"date":"2023-10-28T16:14:46","date_gmt":"2023-10-28T16:14:46","guid":{"rendered":"https:\/\/wpdev.together-forever.fund\/?post_type=kids&p=357"},"modified":"2025-11-25T13:12:21","modified_gmt":"2025-11-25T13:12:21","slug":"mark-kultyshev","status":"publish","type":"kids","link":"https:\/\/together-forever.fund\/en\/kids\/mark-kultyshev\/","title":{"rendered":"\u041c\u0430\u0440\u043a \u041a\u0443\u043b\u0442\u044b\u0448\u0435\u0432"},"content":{"rendered":"

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.<\/span><\/p>\n

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.<\/span>
\n<\/span>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.<\/span><\/p>\n

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.<\/span><\/p>\n

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 <\/span>Teknon\u00a0 <\/span>(Spain, Barcelona), who has already helped many of our patients.<\/span>
\n<\/span>Using a special technique, the doctor customized Mark's medication.<\/span><\/p>\n

After the first drug emotions appeared, Mark began to swallow food and water normally.<\/span><\/p>\n

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.<\/span><\/p>\n

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.<\/span><\/p>\n

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.<\/span><\/p>\n

On February 19, 2024, Mark was admitted to the clinic <\/span>Teknon.<\/span><\/p>\n

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.<\/span>
\n<\/span>There were 2 small foci on the left (they were cauterized with the same electrodes) and 2 large foci on the right.<\/span><\/p>\n

On February 28, the second stage of treatment took place. The surgery was successful, all planned epi foci were removed.<\/span><\/p>\n

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.<\/span><\/p>\n

Epilepsy attacks no longer bother the boy, and his development - does not stand still.<\/span><\/p>\n

Friends, thank you so much for the responsiveness of your hearts.<\/span><\/p>\n

May all good things return to you for sure!<\/span><\/p>","protected":false},"excerpt":{"rendered":"

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