Kaelin Kathleen Lavoie was born a healthy and happy baby in November of 2016. From the first time I saw her, I felt instantly in love with the cutest little girl I had ever seen. Within the first 24 hours she was pushing up on my chest to try and see the world (much to the surprise of the nurses). It was then that I knew we were starting an adventure. Things were going by great until a Sunday in July of 2017 when we saw her head move all the way to the right, her eyes move all the way to the right, and she became stiff and unresponsive. These episodes lasted about 30 seconds and scared both my husband and I. After going to the local hospital and then be transported by ambulance to the Children’s hospital, she was hooked up to an EEG where she continued to have these episodes all night long. The next day we were told she was having focal seizures as well as infantile spasms and she would be starting medications right away.

After a few months the infantile spasms resolved and her focal seizures were controlled with medication. We still had no idea why she was having them so our neurologist sent us for genetic testing. Within 2 months we had our answer…our daughter has a gene mutation called GRIN2A. We were told that she would have seizures all of her life, be globally developmentally delayed, would not speak or walk, and will have a shortened life span. I could not believe that my beautiful little girl will spend her life struggling in many things I take for granted, and that she may not be on this Earth long enough to experience everything I wanted her to. I cried. From that day forward we decided we would fight. I was determined to give my daughter the adventure she so deserved to have.

We have spent our time going to many therapy appointments and doctor appointments. We have tried (and mostly failed) many anti-seizure medications. We have been to orthotist appointments for braces. We have had so many in patient EEG stays. Through it all, Kaelin never stopped smiling and laughing, as if she is saying you have not beaten me.

Today Kaelin is my beautiful 7 year old. She has some words and knows her ABCs and numbers. She loves school, riding her bike, music, Bluey and art. She is overall healthy. She is a great big sister to her little brother and she gives the best hugs you have ever received. Her adventure was nothing like I dreamed it to be…but just as she always has, she is tackling this head on, with no regrets, and a smile on her face.I could not be more proud of her and so very honored to join her on this adventure.