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  • amandalechuga8

Living Life and Fighting for a Cure

Work hard. Play hard. Be Outgoing. Stay Positive. That’s the way I’ve always wanted to live. 


father and son in the woods
Tom and his son hanging out in Zig Zag Falls, Oregon

I’ve also always been a fixer. So, when I started experiencing significant symptoms in my late 30s, I knew I had to find answers. My symptoms started with numbness and tingling in my hands and trouble walking on my tiptoes. I got tired easily and was losing strength in my legs. I even had trouble lifting my infant son out of his car seat and carrying him upstairs to his bedroom. 


Without any real answers, I continued to experience progressive symptoms. Without a diagnosis, I had difficulty staying positive. Eventually, I lost hope that my situation would be diagnosed, let alone fixed. Over the years my mobility steadily decreased, and the pain and fatigue changed the person I was. The muscle cramps were unbearable and the drugs prescribed only led to more falls and broken bones as I struggled keeping up with my responsibilities. Not only had I lost the ability to be spontaneous, but I felt guilty for feeling so bad and being a burden. My outlook grew darker while my temper grew shorter and I lashed out because of the pain, fatigue and because none of us understood. I was angry with the medical community and the insurance companies as they continually denied services for years.  But most of all, I was worried about how to support my young family … all of this added to my hopelessness.


In 2019 after years of misdiagnoses that included pinched sciatica nerve and limb-girdle muscular dystrophy, I was diagnosed with VCP disease …. My diagnosis changed everything.


I met the Cure VCP Disease founders and other members of the community shortly after my diagnosis, and I finally saw hope! It’s not going to be an easy road ahead, but I am no longer alone. With this community, I have found new meaning in the common struggles we share, learned how to educate the medical industry, and seen the importance of telling my story to help find a cure or treatments to slow this debilitating disease.
sunset with friends
Tom on a family trip to Montana

Although so much of my situation has been a challenge, my friends and family have helped to create incredibly special experiences so that I can hold on to those adventurous parts of me.  


Family dinner around the cabin

In 2023, my son Charlie graduated high school. To celebrate, we got a sprinter van and headed out to Las Vegas for the Cure VCP disease patient conference. It was an awesome 31-day trip where we saw some of the most beautiful sites along the way. We visited nine national parks from New Mexico to Montana where we met up with my entire family spending a week combing the Pacific Northwest. We saw cougars at a bar in Vegas, a grizzly bear, a moose, and a buffalo in the national parks. One of the many highlights was going white water rafting in Glacier National Park and sharing our daily highs and lows around the campfire. Together, we overcame many of the mobility challenges and social traumas VCP disease brings with it. I am so grateful for my son, Charlie, my sister Tammy DeWald Scott (VCP volunteer) and my entire family who planned and made it possible for me to do this trip and many, many other things!



several adults on a nature trail
Tom organized a walk in St. Louis for the 2024 Cure VCP Disease I CAN MOVEment

Living with VCP disease or any rare disease is extremely hard. Patients with rare diseases must learn to advocate for themselves and we have to fight for a better future for our communities. Cure VCP Disease has done an outstanding job establishing an organization that focuses on research and resources for patients, and I want to be part of powering these initiatives. I decided a long time ago to turn my “I CAN’T” into “I CAN” and whether it's taking a trip across the country or hosting a walk around the park, my goal is to find ways to support the efforts of Cure VCP Disease in hopes of finding a cure. 



I hope you’ll join us as we MOVE FOR A CURE during the I CAN MOVEment, June 23-29th, 2024. To learn more about the event or to donate, visit givebutter.com/ICAN2024

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Food for Thought:

There are common threads within the trillions of cells that make up each of us, and unlocking the mysteries of these cells will help us all. 



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