Archive - 2017

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Are You #BOSAware?
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Rare Disease Day 2017
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A Decade to Diagnosis

Are You #BOSAware?

Rare Disease Day is an international awareness-raising event. Campbell was diagnosed with Bohring-Opitz Syndrome in October of 2016 after a ten-year search for a diagnosis. There are fewer than 80 people in the world diagnosed with this rare genetic syndrome. To learn more, visit www.bos-foundation.org.  Share this post to raise awareness and consider making a donation. The Bohring-Opitz Syndrome Foundation is dedicated to improving the lives of those living with BOS through the establishment of a medical advisory board, awareness initiatives, and parent/patient advocacy.

A Decade to Diagnosis

 

It’s the eve of Campbell’s birthday and I can’t help but reflect on the last eleven years, particularly the last few months. This past October, we finally received a diagnosis for her unexplained symptoms after a decade of searching for answers.
I wrote about our journey in a blog post where I attempted to give advice to other parents facing the prospect of having a child with an undiagnosed syndrome. I talked about making peace with not knowing several years a go, yet I occasionally wondered if the day would come when we would have a “why” to the cause of her complex medical needs.

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