Honzík is a sweet, smiling boy who has been given a few more obstacles in life than most children. As a baby, he was very communicative… he smiled at everyone, and everyone loved him.
During his second year of life, we started to notice that he wasn’t beginning to talk like other children. Before his second birthday, he had febrile seizures, and then short absence seizures started. Based on this, epilepsy was confirmed. After starting medication, the visible seizures subsided, but abnormalities still persisted on the EEG. Our neurologist sent us for genetic testing, and when Honzík was three and a half years old (just a few days after the birth of his younger sister) we received the diagnosis of a KCNA2 mutation.
Hearing that he would likely not grow out of his epilepsy was a big shock for us. But at the same time, we were relieved to finally understand what was happening and to find a direction forward.
Honzík is continuing to develop, although more slowly than other children. One of the biggest challenges we face is communication. He struggles to tell us what he needs or what is bothering him. Attention deficit disorder (ADD) also greatly interferes with everyday life. His little sister helps him tremendously with his development, including speech, she is his little (and sometimes very determined) teacher!