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My Story

May 27, 2018

I used to be a really active child. I loved to run, ride my bike, go hiking, and play outside with my friends and siblings. I was really into danpcing. It was my dream and passion. I walked on my toes a lot when I was super young and I danced every where and any where.

 

It was the summer of 2007, I was going into the 8th grade, and was just a few days after I had performed in the Stadium of Fire. I was sitting on the couch watching TV and looked down at my feet, and saw that my ankles were really swollen. I talked to my mom just moments later, freaking out that my ankles were gone. We thought it had something to do with the strenuous dancing and heat from the performance. A couple days or weeks went by and my calves began to swell too.

 

We went to the doctor, and they told us to start a log; to measure my calves every other day or so and see if they got bigger. They did. I had to wear well-arched gym shoes for three weeks straight to see if the swelling had something to do with flat arches. A Lot of ultrasounds were done to see if I had any blood clots; nothing was found. Then they checked my CK level with a blood test. A normal CK test averages between 45-230. Mine was 23,500. From that, we knew that something was wrong with my muscles. I had a muscle biopsy on my birthday. A few weeks later, the doctors called my parents with the results from my biopsy. They came down to my room and told me that I was diagnosed with LGMD. I don't remember much about that night. I do remember being sad, possibly crying, and just laying on my bed. I didn't know too much about the disease at the time. I only knew little bits from what I was told when my older sister was diagnosed months beforehand.

 

From this point on, the disease started to progress. I went from being one of the fastest runners in my class to being one of the slowest runners in just a year. And at that rate, my neurologist predicted that I would be in a wheelchair by the time I graduated high school. I was still able to dance for two years, and then cheer for my high school for two years. I really wish I would have kept some form of dance going after high school to keep my muscles strong. I went to physical therapy for six years to maintain my muscles, but struggled to keep going after I got pregnant.

 

Currently, I can no longer dance. I have the worst balance. I can't run at all. Walking long distances can be really tiring and hard. Standing for long periods of time is tiring. I fall all the time. I can't go up on my toes at all. Stairs are completely impossible. Ramps are doable, but can be tough. Jumping is completely impossible. I can't squat down or stand up from squatting position. Getting up off the floor can be really hard. Lifting hasn't been too much of a problem, but weak legs make it so I can't move far when carrying things. It is basically my calf, ankle, and gluteal muscles that have been progressively weakening since the beginning.

 

I had custom-made foot drop orthotics which ruined my walking more. I have had ACL braces for each leg that really helped me walk and keep my knee from locking. I have canes, a walker, and a wheelchair that I don't use much yet, but may need down the road. Matt and I have also been talking about possibly getting a hand-control driven car sometime this year.

 

The last time I talked to my neurologist, I was newly married and was planning on getting pregnant. He again predicted that I would be in a wheelchair after giving birth. I am loving that I have proved him wrong twice now. Although my legs have become weaker, I feel that my arm strength has been maintained from lifting and holding Cali.

 

Even though my life's course changed drastically, I have still been able to accomplish and do many things in my life. I have found such a love for arts and crafts. I love singing. I love boating and doing things with my family. I love cleaning and organizing. I love watching movies and playing games. I love doing all these things that I may have never known if I had stuck to dancing. I married the love of my life, my high school sweetheart, my missionary, and best friend. I graduated college. I had my adorable and happy baby girl. My future career is taking off (stay tuned) and I am still able to have adventures and achieve my dreams.

 

Most importantly, MD has made me spiritually stronger. Being weak physically has it's challenges, and sadly, it's going to get worse. But being spiritually weak is something I hope to never go through. I remember my bishop at the time told me that 'it's more important to stay spiritually strong, than physically strong." And I 100% agree. I have come so close to my Heavenly Father because of all of this and I thank God everyday for the blessings I have received because of MD. It's honestly a blessing in disguise. 

 

I love my life and I wouldn't have it any other way.

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