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Living With A Rare Muscle Disease

Why I Let My Family Help Care For Me

My name is Jackie Smith @msjsmith2, and I am 37 yrs old. I have a rare muscle disease called RYR1 Centronuclear Myopathy. I use a power wheelchair full time, and a ventilator part time to help keep me breathing well. I have two teenage daughters, a boyfriend, a Pomeranian & a kitty. We live near Cleveland, Ohio where there is so much to do. I enjoy spending time outdoors with my family, going out to eat, and sleeping in our sleep number bed!

It is hard to let your children and family take care of you, but once you let your guard down, you can see the beauty in it. My family is my rock and I am so thankful for their kind hearts.

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I am 37, mom to two beautiful daughters, and I have a rare muscle disease called RYR1 Centronuclear Myopathy.

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Jackie Smith

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Living With A Rare Muscle Disease

My name is Jackie Smith @msjsmith2, and I am 37 yrs old. I have a rare muscle disease called RYR1 Centronuclear Myopathy. I use a power whee