Bohring-Opitz Syndrome Foundation, Inc.
"The Best Life for All Families Living with BOS"

Awareness Initiatives

Raising awareness, one person at a time!

London Meets the Prime Minster

London and I have had a busy year so far. Between multiple illnesses and a recent hospitalization, we have been traveling and bringing Bohring-Opitz Syndrome (BOS) awareness with us wherever we go. I want London’s life to be as fabulous and unique as she is, so I take her everywhere with me.  Even before her diagnosis, I knew her life had to be lived to the fullest and to never take a single day for granted. I made a list that is frequently edited, to include experiences I want her to have, and places I want to take her. I also want the public to view special needs children in a different light. It took me three and a half long years of searching and traveling halfway across Canada seeing doctor after doctor, calling and emailing specialists all over the world, researching rare diseases one by one and making a list of possibilities to be further looked into, etc. On November 26, 2018, I finally got the answer I was looking for. London has BOS.

Last month, London and I met with the Canadian Prime Minister, Justin Trudeau, in Halifax, NS. This meeting was for me to introduce London to Justin and tell him our story. He is now BOS aware. I am so passionate about spreading awareness because people cannot be compassionate, become involved,  or work on a solution to a problem they do not know even exists. In the coming months I will be meeting with PMO, policy and the Health Minister. I will share my experience, concerns, present information, and request changes be implemented as well as resources dedicated to BOS. This is so important to me because of the battle I faced just for a diagnosis. Not treatment and services…… a diagnosis. 

I find it difficult to believe that there is only 2 children with BOS in Canada and over 35 in the States. I would love if my spreading awareness helped geneticists to diagnose some of the patients with BOS that may be out there currently or babies born in the future. Getting a diagnoses was life changing for me. I finally know I am not alone, the observations and concerns I have are real and also observed by other families, I have a wonderful group of parents to connect with to ask questions and seek guidance, and most importantly I am able to manage my expectations for our future. To have an idea of what to expect, and to not have to be continuously researching for countless hours (in addition to everything else I have to do as a mother of a child with complex needs) has been immeasurable to me.

Taylor GurganusComment