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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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Ayrie's 18th surgery

Ayrie looking at the Charles River out his hospital room window

Hello everyone.  As you may have read, I started this blog because of the experiences I have had over the last two years since my son was diagnosed with the rare disease Juvenile-onset recurrent respiratory papillomatosis  (JORRP).  We currently fly to Boston for surgery because I learned, [...]