Bohring-Opitz Syndrome Awareness

image1-1As many of you know, Bohring-Opitz Syndrome has a special place in my heart! When Talynn was diagnosed there wasn’t a ribbon, colors, nor awareness day. I knew that these things needed to be created because someone as special as Talynn deserved to have a special day! Well I got one of my friends to create a ribbon and I worked with the Support Group to determine the day and colors. Next on my list was a foundation.

A few months later, another sweet girl was diagnosed and her mom had the same vision. A foundation was created! In one short year, we’ve supported patients and their families, established a medical advisory board, and raised awareness. I’m the chair for the awareness committee. My goal is to raise as much awareness as possible. One way I do that is social media.

A few months ago, I was on Instagram and I came across a family who had a daughter (10yrs) who was undiagnosed. The daughter had many features of BOS so I messaged the mom and asked her if she had ever heard of BOS. She said she would mention to her doctor and keep me posted. Today, I get a message from her mom that said : “Hey! We just got my daughters  diagnosis of Bohring Opitz!  It’s a long story and I will fill you in soon but I got it over the phone and think I surprised her counselor when I said Yes!  Rather loudly and excitedly.  Of course I explained you had contacted me and I was just glad to have a name and a support network.  Whew! 10 years of not knowing…”

To know I’ve helped this family whose waited TEN years for an answer makes me beyond happy and I’m glad they are apart of our wonderful BOS Family!

#bosfoundation #specialneeds #bohringopitz #bosawareness #talynnsjourney

 

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