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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The Invitation
by Oriah Mountain Dreamer
Have you read this poem before? My friend posted a quote from this poem on her facebook page and it really intrigued me. I asked her about the quote and she sent me to this page. As I read the poem I felt it resonating with me. I’ve aways been a high [...]
This post is written by my sister Emily (the beautiful bride below). This post shows not only how amazing and special she and her husband are, but also how much a rare disease can impact the extended family. This narrative was originally posted on http://potteryblog.com
xo nora
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This post is a very personal one. It’s [...]
One thing that having a chronic condition does is make you grow up quickly. When Ayrie is in the hospital he is as composed and mature as an adult. He may have been throwing tantrums the day before but the minute we board that plane to fly for Boston he is the epitome of good [...]
My friend, Julie Wight, just introduced me to the idea of narrative medicine. I am reading my first article and I think I might be hooked! Part of what interests me is the idea that mind and body are not separate. I know about my mind, my emotions, my fears… and there are some things I know [...]
Here’s your opportunity to write a post for Rare Disease Support and be a part of something bigger! It’s pretty simple. You send me a blog post (anywhere from 10 to 10,000 words about anything related to rare diseases, from the perspectives of moms, dads, kids, family, friends, doctors, pharmacists, etc), and I will post your [...]
This is such a journey! I just found this post on facebook from nine months ago. It was from Ayrie’s last surgery in Chicago, just before we moved to Minneapolis. It’s hard to believe all we’ve gone through in the last nine months both generally and health related. I actually took a stress quiz [...]
Here’s and excerpt from an email that I sent Ayrie’s surgeon this Sunday morning:
I am not sure how Ayrie is doing. This Monday will be 4 weeks since the date of his last surgery. This past week he has sounded as though he breathing is tight… I’m not sure how else to explain it. It’s as though he isn’t quite getting the full volume of air [...]
I was reading through my notebook for school and I found this note that I wrote to myself on November 2, 2009.
Ayrie had his surgery on 10/30/2009 and we got some good news… the funny things is that I’m just feeling good about it now, 4 days later. This isn’t the first time that there has been [...]
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, [...]
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Disclaimer Nothing on this site constitutes medical or legal advice. I am a mother and advocate who is engaged and enjoys sharing my family's experiences JORRP and news about rare diseases and health care. Please consult your own health care providers for advice on your unique situation.
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