I had my second Walk to Defeat ALS this weekend in Bismarck! It was great and to top it off the rain held off for the walk and it turned out to be a beautiful morning! Usually I participate in the walks with a team, but this time I was a volunteer. We arrived at Sertoma Park at 7:30 in the morning and starting hanging up signs, blowing up balloons, and getting everything organized for the walkers to arrive. It was a great experience to be on the other side as a volunteer; I got to see how much work goes into setting up for the ALS walks. Once the walkers started to arrive, I was in charge of getting the teams registered and registering new walkers for the day. There were so many people and the time flew by. Before I knew it, it was time for me to give my speech.
I again shared a little bit of my mom’s and my story and made an impact on some people, but this time I impacted a family in a different way. After the walkers came back from walking and we started taking everything down and cleaning up, a man approached me. He explained to me that he lost his daughter from ALS and she was only 34, so when he heard me say my mom was 34 when she was diagnosed it really hit home for him. He then pulled out his phone, showed me a picture, and said, “and this is what she left behind.” The picture was of three beautiful children, twin boys who were 13 and a girl who was 11. At that moment, I can’t describe to you how I felt. I started talking with the man and I said I wish I could talk with the kids, and he happily said that they hadn’t left yet. I walked with him over to the rest of his family and introduced myself. We all started talking and I began to listen to their story and their journey with ALS. As a nursing student we learn how to communicate with patients in difficult situations, but nothing can prepare you for knowing how to talk to a child who has lost a parent. I grew up with a sick mom and had to step up at a very young age and take on responsibilities most kids do not take until they are in college, but I have never lost a parent. The kids that I met were the most strongest and beautiful children that someone could meet. They have gone through a situation that I have not had to go through, and I let them know just how amazing they were. I know that I have impacted people’s lives, but that family had an impact on me that will stick with me forever.
When I was crowned Miss North Dakota International in December, I had a vision of what I wanted to do. One of my visions was to help out kids whose parents are affected by ALS. There are ALS support groups across the United States for families, but to my knowledge from my research that I have done, there is nothing set up across the United States for children. The children are allowed to go to support groups with their parents, but coming from personal experience, it can be very intimidating to attend them. It is very hard for children to talk about their emotions and I along with my siblings know exactly just how hard it is. It is especially hard when you are surrounded by adults. I wish so bad, that I knew there were other children affected the same way I was when I was young, and I know my brother and sister wish so as well. As a child, you think that you are the only one. This weekend, I was able to start this particular vision. I was there for those kids, and I plan to be there for them. I want them to know that they aren’t alone and that I know what it is like to have a mom diagnosed with ALS. Although my mom is still living, and their mom sadly passed, I want to still help them in any way that I can.
This past weekend I also joined the Fargo/Moorhead ALS Walk Committee to plan the upcoming walk in August. I am so excited, and I can’t wait to get going on fundraising and organizing the event! So many doors have opened for me, and I can’t wait for more to continue to open!
The life expectancy for an ALS patient is 2-5 years, with 20% living past 5 years, and only 10% living past 10 years.
ALS stands for Amyotrophic lateral sclerosis, and is also known as Lou Gehrig’s Disease