𝓡𝓪𝓻𝓮.𝓫𝓾𝓽𝓽𝓮𝓻𝓯𝓵𝔂🦋
@rare.butterfly91 • 3,240 subscribers
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Nemaline myopathy affects 1 in every 50,000 births per year. For our case, it's genetically inherited, I have this gene mutation. For me, they say it's a spontaneous gene mutation. With that said. this rare disease effects our whole body & some more severe then other areas. we struggle with muscle weakness & when we use said muscles they get stressed & fatigued. it effects our lungs & heart. our swallowing muscle & talking muscles. facial weakness is strong & it's hard to smile some days. for Ezmile it's worse. his face muscles don't let him make a full smile. breaks my heart... but we are strong through it all. even with no cure. praying one day in his life time they'll be a cure though. 🙏🏼 💙✨️ #viraltiktok #teamwork #nemalinemyopathy #momsoftiktok #mentalhealth #spooniesoftiktok #chronicillness #mobilityaid #repost
𝓡𝓪𝓻𝓮.𝓫𝓾𝓽𝓽𝓮𝓻𝓯𝓵𝔂🦋41,900 views • 2 years ago
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