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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

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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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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The perspective of family friends

Also posted on: The Children’s Rare Disease Network

To know Nora, Ayrie and Shiya is to absolutely love them.  Spend an hour with Nora and you’ll see how much she cares for her boys, spend a day with her and you’ll see how strong she fights, spend a couple more years with her and realize what perseverance really means.

Our [...]

what can families do to help everyone thrive?

Again, this is copied from a fantastic resources provided by the University of Minnesota’s Health Systems.  If you are a parent, reading this list might reassure you that you are already making good choices!  For friends, you might get ideas for areas where you can offer a family support.

Stay involved and give information

Discuss with your [...]

What to Say When a Friend's Child is Diagnosed With a Disbability?

Sometimes people don’t know what to say to me.  And that’s okay.  If the  roles were reversed I think I would feel the same.  But there must be some information out there that helps you know what to say when your friend or loved one is going through a hard time because their child has [...]