Please reblog or share so my friend can find someone who has this disease. Social media can be powerful!


When I was 2 and a half years old my sister, decided to take me on her bike when she went riding. So she puts me on the handle bars and expected nothing would happen. She was wrong. I slipped forward and somehow my foot was caught in the spokes and was broken, badly. Not long after, I fell in the kitchen and broke both legs and stayed in a body cast for 3 months. During this time my mom and dad became aware that my spleen was 3 times the size it was supposed to be and took me to the doctor.

And so the journey into medical hell began. After a lot of testing, biopsies and pain, it was determined that I have a very rare illness one that caused holes in my bones, fluid to build up around my heart and lungs, and caused my heart and…

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