Hi, I'm Emily.

Emily is a great multi-tasker! She can eat, sleep and float around her pool all at the same time because of her G-tube.

Hi, my name is Emily Katherine Dedon. My mommy is typing this for me. I am nonverbal and non-mobile but I still have a lot to say and I enjoy doing lots of things that other kids do like going to the zoo, and the beach and even to Disney World! I like to float in my pool, snuggle with mommy & daddy, go outside to swing and I love bath time.

I was born a little early and spent lots of time in the NICU getting my seizures and breathing under control before I could come home. I was given a trach to help me breathe, a G-tube to eat and get my meds, and lots of meds to stop my seizures.

I was 4 1/2 months old when I came home and I was very excited to be out of the hospital. I need lots of help each day so I have nurses that come to my house to help. That lets my mommy and daddy get some rest. I get lots of therapy and my teacher comes to my house to see me since I've started school. Sometimes I get sick or get lots of seizures that don't stop and I have to go to the hospital for a while until I get better. I have a big family that I love and they help us when we need them.

I am always trying to learn how to do new things but it can be very hard sometimes. I have a lot of friends that help and encourage me to keep trying. I like going to church with mommy and Maw Maw and I say my prayers before bed every night.

I hope that one day there will be a cure for SCN2A and that me and all of my SCN2A brothers and sisters will be able to do all of the things that right now we only get to do in our dreams.

Thanks for reading my story. If you feel led to pray for me, I would really appreciate that and if you'd like to make a donation to the FamilieSCN2A Foundation that would be very nice too. May God bless and keep you!

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