Lennox Gastaut Syndrome



Hi everyone, my name is Ashleigh Rowe and I’m 15 years old. Mama and Daddy say I’m the toughest person they know. I think that’s a good thing, but Mama says she wishes I didn’t have to be so tough. I have Lennox Gastaut Syndrome, that’s something that makes me have lots of seizures. I’ve had those seizures pretty much all my life, but I try not to let them get me down. Doctors said I’d never walk or talk. One even told Mama and Daddy they should just give up trying to help me and just accept things the way they were. You should have seen his face when I walked into the office one day! I may have been 7 years old when I learned to walk, but I never gave up. I kept working at it with Mama, Daddy, and my therapists until I got it! I think Mama and Daddy must be pretty tough too. I know my seizures hurt them. I can see it in their eyes and on their faces. I think they get pretty scared sometimes, but they never stop trying to help me. That’s why this summer, with the help of Journey of Hope, we moved to Colorado. They have a special medicine here that I wasn’t able to get back home in Georgia. So far I’ve been on the medicine for 5 weeks. I still have seizures on this new medicine, but I’m not having as many. I’ve even had 7 whole days when I didn’t have one seizure! One night I even woke up laughing! I know that may not sound like much, but Mama and Daddy said they couldn’t remember the last time I laughed. We stayed up for hours laughing with each other. It was a great night. I wish all the people who could use this medicine were able to get it without having to move to another state. I sure do miss my Granny, my uncles, aunts, and cousins. I know they understand though, and they want me to get well. Thanks to Journey of Hope, I think I just might be able to get better.

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