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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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Hope Infusion #4

Hello and welcome back, or if you are new around here welcome! I’m glad you are here. I hope my blog sheds light on what life can be like for a person who has lived with a lifelong disability. If you’ve been around, you know that I decided to give the world of stem cell treatments a try. At this point in my life, I have been offered very few “treatments” for my muscular dystrophy. 



So, here we are and I’m preparing to receive my 4th round of SVF stem cells. This just means that they are my own stems cells that were extracted from me, processed and preserved, and I chose to bank them for future use. If you would like to know more, please refer to previous blog posts titled Unexpected Opportunity, A Meaningful Gamble and Moments Like This, as I went into detail about how each treatment went. 

This time, is just like the last. I have already gone through the hard part of this treatment during treatments 1&2 where the cells were extracted, so now and future treatments really are a breeze. It’s as simple as a quick infusion, taking around 20 min from start to finish, with the only pain being a slight needle poke to start the IV. Small potatoes. 

Depending on who I’m talking to about the treatments, there is a variety of opinions, which of course, people are entitled to. I’ve heard everything from extreme optimism and positivity for me, to very skeptical and negative  responses. I’m not sure why anyone would be opposed to someone finally trying something that could potentially benefit them after living a life filled with physical hardships. At this point in my life, this is it, all I have. I’m grasping for anything that is going to save me from my deteriorating muscles. I mean, it’s coming from my own body, so it’s not hurting anyone! 

I should point out again, that this treatment was never presented as a means to a cure for muscular dystrophy. That’s not what anyone has claimed, but rather more for stabilizing and holding me steady where I am, and maybe opening the door for slight improvements with more endurance for physical activity. It works in the way that you also have to work it. Eating right, exercising, doing everything I can to get the most out of theses treatments. The treatments are all out of pocket. They are not covered by insurance. I want to make sure I get the very most out of them I can. I rarely miss a workout. If I’m sick, I push through. If I’m hurting, I push through. Tired? Pushing through. Not because I’m so tough, but because I don’t have time to miss an opportunity. I don’t have time to waste. 

As I finish up this blog post, I’ve just arrived back home after my 4th treatment. My doctor told me I look like I’m doing great, and definitely don’t look like the same person I did the day we met. For me, this treatment gives me HOPE. Something we all need to cling to in this tough world. It takes humble courage to try new things that aren’t always backed by everyone. Sometimes, you just have to go with your gut and grab the opportunity when it presents itself. Before this treatment, I felt like I was declining quickly, and was having some really hard moments physically and mentally. My husband graciously tracks my workouts and has made a nice graph to reference since the start of these treatments. I think it speaks for itself in proving that I am, in fact, staying steady. 💚



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