What a strange world we live in. For 7 1/2 years I have been part of a rare disease community that continues to amaze me, and not always in a good way. My son is dead from this horrendous disease which we had no advanced knowledge of. Evan Cousineau suffered greatly in that 6 month period of time from diagnosis to his death, and from that tragedy I have been razor focused on advocating not only our ALD community, but for patients around the world in need of donors....blood, bone marrow, organs/tissue and cord blood, all because of my Evan and all the children we fought with on that pediatric bone marrow transplant unit at the U of Minnesota Childrens Hospital. None of us had HOPE without our donors and I am determined to share this message with everyone so that I can attempt to spare others the tragedy of losing a loved one in this manner. I am doing something really big and important because our our horrendous loss, yet people in my rare disease community continue to stick their heads in the sand and allow this beast called ALD to proliferate among future generations. Im disgusted and disappointed, and with every fiber of my being I believe these people are the greatest child abusers among us, choosing to bring a child into this world that will have a 50/50 chance of having and suffering from this beast. How in Gods name can any sane and logical person make this choice. We have options to stop this beast in its tracks, yet we allow it to exist. God help these people who choose to be ignorant and uneducated, and these innocent unborn babies who ultimately will pay the price for their parents selfishness and stupidity. As a mother of four, I would die to protect them. ALD stops in our family with Evan. Not one more baby will be born w this dreaded disease in my family. The buck stops here.
Posted on: Fri, 21 Nov 2014 18:58:10 +0000
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