Submitted by: Patricia N. on Fri, 12/23/2022

My mom passed away 11 years ago from ALS. She was diagnosed at 37. I was 8 and my sister was 4. She lived with it for 10 years. She fought every day to spend more time with us because she knew she wouldn’t see us grow up. At that time, she was given 18 months - 2 years to live. I just turned 30 and obviously I am nervous about what this disease could do to me…I don’t have children (yet) and we don’t really know if it is genetic or not…she was told it wasn’t but that was over 20 years ago now. Sometimes I wonder if I should get tested or if I should even have children. It was the hardest thing…watching ALS strip my mom’s independence away. By the end she couldn’t even talk. I miss her every day.

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