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Rare Disease Day

Today is the day to shed light on rare diseases world wide. In the United States, a rare disease is defined as a condition that affects fewer than 200,000 people. There may be as many as 7,000 different types of rare diseases, Duchenne Muscular Dystprohy is one of them. Ironically, it is one of the most frequently diagnosed disorders and affects about 1 in every 3500 boys. That is about 20,000 new cases EVERY year!


My boys are RARE, but not only because they have Duchenne. My boys are rare because despite having Duchenne, each day they choose to show up. They choose to be kind, faithful, giving, loving, nonjudgmental, and extra forgiving little humans. Each day they show up ready to fight Duchenne. They are rare because they are amazing. They are rare because they are strong and dont need muscle mass to prove it. They are rare because they dont give up. They are rare because they always trust God, they try their best to always follow Jesus and they never stop praying. My boys are RARE and honestly I wish more of us could be less common. Let us be rare by coming together as a solid community to help bring awareness to rare disease. Let us be rare by loving better, supporting more, and being the community God calls us to be.





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