Rare Reflection

Dona Krystosek - Rare Reflection


Dona Krystosek

49 yr old

Jansen’s Metaphyseal Chondrodysplasia

My ultra-Rare son, “Little Levi,” just finished nearly a week of medical testing at the NIH for research. At 12 years-old, he knew that everything he went through would probably not help him with his condition, Jansen’s Metaphyseal Chondrodysplasia. He was at peace this afternoon. He walked up to the Lincoln Memorial Reflecting Pool and stretched his arms out. I quickly snapped a picture. You can see the deformities in his arms. His motto is GO LIVE LIFE. Mine is keep advocating for him and others.

Follow little Levi’s journey on Facebook @littlelevi