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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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 [...]
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 [...]
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 [...]
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 [...]
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 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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