JORRP | Rare Disease Support

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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

Innocence lost… how my son’s rare disease has made me more fearful

This post is a bit dark and depressing. So feel free to stop reading now! It’s titled ‘Innocence lost… how my son’s rare disease has made me more fearful’ but ironically, I will also be writing a post titled ‘Purpose gained… how my son’s rare disease has made me more fearless’

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Oh, my dreams. They are [...]

A New Sense of Normal

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 [...]

what does stridor sound like?

If your child has JORRP or any other disease that causes airway obstruction you have likely heard the term stridor. I have spent many a night awake, listening to my son’s breathing wondering, “is that wheezing? is that stridor? how can I tell the difference da**-it!?” It’s scary and for me, a person who likes [...]

Are there additional HPV genotypes that cause HPV?

The European Journal of Pediatrics recently published an original paper with the following abstract. Every once in a while someone writes into the RRPF listserv reporting that they thought they or their child had RRP but their tissue biopsy came back negative for HPV so this abstract caught my attention.

Introduction
Recurrent respiratory papillomatosis (RRP) is characterized [...]

questions many 4 year olds don't have

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 [...]

The connections between Education and Health

My son was diagnosed with a rare disease two years ago. He has had twenty surgeries, countless doctors appointments and has been robbed of his voice. As a result I have willingly and aggressively plunged into the field of public health. I sit in classes these days where the people are talking in a language that sounds [...]

New Propranalol Clinical Trail

There is a new clinical trial for propranalol, the drug that my son is taking for RPR. It says invitation only but if you are interested, your hospital may be able to work with one of the trial sites near you. If you want to try propranalol with your child, it’s worth asking about!

The details are listed [...]

Pitt Researchers Receive Patent for New Head and Neck Cancer Treatment

It seems that this article is saying that the new drug might treat JORRP and RRP. What do you think? Click here for the full article.

The new treatment is based on a form of genetic therapy called “antisense,” or AS, in which a synthesized strand of DNA or RNA targets the EGFR genes within a [...]

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, [...]

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