Siyeon Kim’s Story

Songpa-gu, Seoul, South Korea

She was diagnosed with kcna2 in 2017 at Seoul National University Children’s Hospital in Korea. She was born in 2010. For the first two years, she did not have seizures while taking epilepsy medications. She has developmental delays and falls due to lack of physical coordination ability, but is improving a lot through special sports. However, she is not keeping up with her peers in terms of development.

Medical support for disability diagnosis is not available in Korea.

However, schools are subject to special education. I know there are about 3 people in Korea. Our daughter started out with febrile seizures at 6 months of age. Then there were small seizures like eye blinking. Next, she had grand seizures during sleep on tired or sick days once or twice a year. There were hard days for years due to drug side effects, but now she has been taking Sentyl and Orfil twice a day, and there has been no seizure in the third year.

She is currently in the 6th grade of elementary school in Korea and attend a general public school with the help of a special class. She is doing social therapy and psychotherapy, special exercise and double language therapy, and her gait balance is unstable. She seems to be getting a little better.

My child likes friends and is having difficulties forming relationships, but is a bright and hard-working, pretty, kind child. She is very interested in art, such as drawing and making, and also very interested in and loves animals.

김시연, 대한민국 서울특별시 송파구

대한민국에있는 서울대학교어린이병원에서 2017년에 kcna2진단받았고 현제 2010년생여아입니다 뇌전증 약물복용중 2년간발작 없었음. 발달지연이있으며 신체협응능력이 부족하여 넘어지고 있으나 특수체육등 운동으로 많이좋아지고있으나 또래에비해 부족하긴합니다.
한국에선 장애진단 의료지원안되요
그러나 학교에선 특수교육대상은 되요
한국에선 3명정도 있는걸로 알고있어요.
생후 6개월에 열성경기로 시작해서
작은 눈깜작 소발작 그리고 일년에 한두번 피곤하거나 아픈날 수면중 대발작을 보였고 경계선지능 협응능력부족등 발달장애증상이 보였습니다.
약물부작용으로 년간 힘든날이있었지만 지금은 센틸과 오르필 을 하루 두번 복용하고 3년째 발작은없습니다.
지금은 한국에서 초등학교 6학년이고 특수반에 도움을받아 일반공립학교에 다니고있습니다.
사회성치료와 심리치료 특수운동과 더블어 언어치료등을 하고있고 현제 보행 균형이 불안전하나 좋아지고있습니다.
저희 아이는 친구를 좋아하지만 관계형성에 어려움을 격고는있지만 밝고 노력하는 이쁘고 착한 아이입니다.
그림그리기 만들기 등 예술에 관심이많고 동물들에게도 관심도 사랑도 넘칩니다.