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Welcome to our site

This site is a place for the people who love a child with a rare disease, disorder or illness… the child, parents, siblings, aunts, uncles, grandparents, guardians, cousins and beloved friends. I am the mother of a son with a rare pediatric disease, JORRP, and the last two years have been a journey for our family and loved ones. We have felt fear and triumph, desperation and hope. I have never felt more supported, or more isolated. I hope to use this website as a place to share information, support and stories. This website and community will grow through your contributions. So please, consider sharing information or a story or building a profile. Thank you. xo, nora

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

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If you have found this site to be helpful, please consider making a donation. Every dollar supports my work on this website or is applied directly to medical expenses.

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Power

“Exposing power-relationships and working to minimize inequality are essential preparation for participation in a democracy.”

Jerry McClelland (1997)

I believe this is true and I believe that this applies to our ability to advocate for ourselves, our children and our family.  When dealing with a rare pediatric disease, we encounter so many people in positions of ‘power’ that we find ourselves trying to communicate with: bosses, surgeons, insruance representative, teachers, etc.

Some oppression is done to us by these people or by the structures that they work within (hospitals, schools, companies, etc.), and sometimes we oppress ourselves by accepting definitions created by and limitations imposed by society.  Recognizing that all relationships have an element of power, and helping people to identify the sources of power, creates a critical awareness that in turn allows us to be more active in creating the right balance of power in different situations.   This is critical for family members to understand as they relate to each other, and as they try to understand their connection to the larger society.

McClelland, J. (1997). Critical pedagogy: Guideposts for ethical action in family and consumer sciences education. In J. Laster, & R. Thomas (Eds.), Family and consumer sciences teacher education: Yearbook 17: Thinking for ethical action in families and communities (pp. 162–172). Peoria, IL: American Association of Family and Consumer Sciences and Glencoe/McGraw-Hill.
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