Hi, I'm Henry.
Henry loves music, nature and books.
Henry was diagnosed with SCN2A gene mutation around 2020 after he had 5 seizures in 3 days. It was very devastating news for our family. At that time, we lost all of our hope because there was very little information and no cure for this rare disease. I was trying to read all researches about SCN2A, talk to his neurologist, searching for therapies and natural, mindful healing. I wanted to combine science, therapies with natural, therapeutic healing food and meditation. We changed our diet to whole, local, seasonal, home cooked and vegan food. We created a routine of walking mindfully in the nature everyday. Futhermore, we created calm meditation room for Henry to calm down when he is overwhelmed. We improved our garden and let Henry go out to enjoy nature. In addition, we took Henry occasionally to Portland Japanese garden for walking meditation. We try to limit Screen time and help him to engage in mindful, calm activities or activities that he likes such as books, music. Besides that, we have Speech, OT (in reach) and ABA (Kyo care) at home. They are home based therapies that encourage child learn through play. Henry is showing a lot of improvements. He is now 1st grade student and has no seizure for 4 years. He can sleep through the night (not wake up 2,3 times/ night like before). He is still non verbal but use his speech device to communicate with others. He is healthy, active, happy and well developed at his own milestone. He improved a lot compared with last few years. I hope that Henry's story can give you some hope, tips and tricks from our family experience.
I would love to share one of my extra experiences. I really believe in the power of praying. When there is no hope, darkness or challenges, I always pray and I can see the light in the darkness.