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Aspiration

We aspire to provide support for people impacted by rare pediatric diseases by sharing stories, providing information, and building community.

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about the author

As I write this on the eve of 2010, I am a single mother living in Minneapolis with my  two boys ages 2 and 3.  My oldest boy, Ayrie, was diagnosed with a rare disease just before his second birthday.  In the 22 months since diagnosis, Ayrie has had 18 surgeries to remove benign tumors from his vocal chords in order to keep his airway open.  He can rarely talk above a whisper.  Ayrie is amazing.  He is strong, brave and resilient.  But I can not overstate how much his disease has impacted our immediate family, our extended family and our closest friends.  There are ways that this disease has detracted from our lives and there are ways that it has made our lives much richer.  But each of us (Ayrie, his bother Shiya, their grandparents, aunts, uncles, cousins and close friends) have been changed.

I am a former high school teacher, non-profit manager and outdoor adventurer.  Thankfully I attended Earlham College  for my undergraduate studies, a college that nurtured my interests in human dignity, relationships and advocacy.  My masters degree is in educational research methods and I am pursuing a doctorate in Family, Youth and Community Education with minors in evaluation and public health at the University of Minnesota.

I continue to learn about how important advocacy is, how much we need support, and just what ‘quality health care’ means.  Thank you for joining me on this journey.

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