The ALS Association

I Loved Seeing My Mom Laugh

Nelly Ö. Stockholm, Wyoming

When I was 11, my mom was diagnosed with ALS. As a child I had no idea what it was or what it does to the body, and almost no one else in our family either. In Sweden there is a website in witch you can read about almost every known disease, and the page about ALS had less then ten sentences about what it was, where it came from, cures or other facts. It started off with one medical assistent living at our home, but soon we had at least two at them during the day and always one during night time. We lived in a small apartment and when she and all of the things she needed, I had to share a room with my dad. As a 12-year-old, having strangers at the house all time and having absolutely no private space at all, it affected me. I was always trying to stay positive, and I don't think, even though I was told a lot of times,that my own mom, best friend and biggest role model would pass away. We had races with her electrical wheelchair. We played with a computer that you control with your eyes and made it say words that it couldn't pronounce. I loved seeing her laugh. But one day she couldn't do that no more, and it broke my heart. She passed away two month before I was going to turn 14 and now that is almost five years ago. She was a fighter; one year earlier the doctor said she had three months, but she lived for another year. Now, living without her, people ask, and I have met one person of every single one I told about her too, who knows what ALS is. The awareness of this horrible disease is so low, and yet there is so many people being affected by it. It is not just the sick person but the whole family, friends, and a lot of others affected by it. I am so grateful for all the amazing people that helped me and my family go through this. There is a lot more to tell, but this little piece of my story can maybe help or let someone feel that they are not alone in this hard battle that affects so many people. I think it is important to be brave and tell your own story to let the world see what ALS really is to everyone involved. And at last, I hope that the future of this disease will be brighter so that mothers or fathers can see their children graduate, succeed in life and get married. So that little boy or girl can feel the warmth of a parent's arms and so that the world can work together against ALS.

 
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