“God, grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.”- Reinhold Niebuhr quotes
I never knew one small invisible disease can change a girls life forever. All those wonderful moments thinking you are the most beautiful, most perfect princess in the world, vanish into thin air. All the good times being in sports and being active really changed me. All the little seizures repeatedly pumping pain into my hands and feet. I didnt know if spending the rest of my life on treatment would help me or make my life worse. Out of 2000 people in the U.S, it had to be my family.My Mother's father had the disease, and died from it on June 3, 1995. My mother would get pain in her hands and feet, and didn't know it could be genetically passed on. As her life went on it went away. She got married and had a boy named Alex. They got Alex tested at the age of three for Fabrys disease. He had it... My mom seperated from her first husband and married my father. In the year of 1998 I was born. Six years later, Alex started having symptoms of Fabrys disease. The doctors put him on a treatment that he would be on for the rest of his life. Four or five years later, I started showing symptoms of the disease. I was diognosed with Fabrys Disease on July 21, 2011. As of right now I'm pending treatment.
My cousin Kaitlyn and I have started this foundation to find a cure for Fabrys disease. Ever since our Papa died of Multiple Myeloma in 2006, our family has had the passion to help others. It seems like every member of our family has gone through a life changing moment. It's been tough and hard but we've made it through as a family of one. We WILL find a cure to cancer and Fabrys Disease even if it takes a lifetime to find!
