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Humbly Courageous
Hi, I’m Amy. I live life with a condition called Bethlem Myopathy which is a rare form of Muscular Dystrophy. I like to help others by showing how I live well with a debilitating condition. I was born with this disease, so it’s the only way I know life. I continue to work on embracing myself and using that to help others.

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On The Road

Hello, welcome to another week at Humbly Courageous! Guess what? This is my 99th blog post! I wonder if there are any readers who have read all 99? If you have, thank you! I’m excited to share my 100th blog post next week, which also happens to be within the same week that I will celebrate the 4th birthday of my diagnosis day! It’s a day that I love to celebrate now each year. The day, I was finally, formally introduced to my whole self when I was 44.


Hey, there’s me!

Last week I was invited to speak at the Muscular Dystrophy Association’s Chicago Toast to Life Gala. I was honored to be asked, and I’m not sure I’ve ever been to a gala before. For sure I have never kicked one off with a speech. It’s definitely fun to get dressed up and go and see all of the fancy people. It’s been awhile since I’ve been able to get fancy. 😊 


Each time I speak, even though I’m sharing my story, I like to write a new speech. Over time, as I share my story, I think of other things I want to add, or maybe reword things in a way that makes more sense, or gives more meaning. This speech was only about 6 minutes long, so not too long. It took me a bit to write it, edit it, and then practice it many times to make sure I could feel confident while giving it.

 Turns out, I really like doing this kind of thing. The girl shaking in front her high school speech class and sweating profusely when having to give a speech would never have believed this would be something she actually enjoyed! It’s not been that long ago that I couldn’t talk about my story of growing up disabled, without crying and sadness. Now I speak confidently about something that I know better than anyone. It was all about accepting myself as I am. That was the difference. Seeing the good in who I am, not just the disability without the goodness attached to it. 

 


Speaking and connecting with others at this event, who also live with Muscular Dystrophy, continued to ignite a passion in me that I didn’t even know existed until just a few years ago. I’m so honored to be MDA’s National Ambassador, as I know there are many worthy of this position. I cherish the times I have the opportunity to speak and share my story. 








I met a young lady named Summer and her amazing family. It does something within you when you get to see someone in person who is similar in walking and moving as you are. It’s rare that I get to experience that. It kind of takes my breath away to see, in real life, that I am truly not alone. I had to fight back many tears throughout the  evening thinking about how this has been my dream for so long, starting when I was just a tiny little girl. I prayed for this for years. It has come true, and I am so very grateful. Public speaking no doubt takes humble courage, and I am here for every minute of it! 💚



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