The Les’ Journey with SCN2A

What is your family like?

Our family likes a calm, mindful environment. We love mindful activities such as walking, gardening and meditation.

What do you do for fun?

Gardening, going to the Japanese garden, cooking, and enjoying healthy vegan food.

Tell us about the biggest hardship you face.

Henry was diagnosed with an SCN2A gene mutation. He has severe autism and it is difficult for us to know what he wants because Henry is non verbal. He is still in potty training and makes a big mess sometimes.

What impacts your to participate or not to participate in research? How has participating in research been helpful for you?

I would love to share more information about the SCN2A gene mutation. Henry is improving a lot due to diet, lifestyle, and therapy.

How do you feel you are helping Simons Searchlight learn more about rare genetic changes?

Giving hope for families with newly diagnosed SCN2A.

If you could give one piece of advice to someone recently diagnosed with the genetic change in your family, what would it be?

Be positive. We changed Henry to a vegan diet without milk and eating whole foods. He has not had any seizure for 4 years. We try mindful activities like walking, meditation room, and having a calm environment. His behavior improved a lot. He can sleep through the night and engage in therapy more. ABA, speech and OT home base are working well for Henry. He improved a lot. He is healthy and happy. He is going to public school with his typical peers and improving in sleeping, eating, and a lot of skills. I believe in the power of praying which guide me during darkness time and when i lose hope. Please don’t give up.

How has Simons Searchlight served as a resource for you and your family?

I understand more about SCN2A and know more about other families stories.