Bohring-Opitz Syndrome

Awareness Day (April 6th)

Awareness: noun
1.the state or condition of being aware; having knowledge; consciousness:
http://dictionary.reference.com/browse/awareness

Awareness is something that I enjoy doing. I do it because I do not want to see another family/child go through the pain of being undiagnosed.  My child went almost a year without answers.  I cannot even begin to tell you the pain it caused.  I would leave different appointments wondering why I even went there in the first place.  I would also think  “How can someone who makes so much money not know what is wrong with my child?!?!”  This is a hard concept to understand.  I still get “we aren’t sure” or “it’s just Talynn”.  I want to know WHY?!?!  I have a problem solving brain (hints why I was a math teacher).  If you give me the problem I want to solve it.  I honestly do not know if there is a solution to the problem besides LOVE.  One of the other BOS moms told me that the best thing to do is spend everyday as if it was the last and just love that baby.  This is what I try my best to do everyday!

I have found that talking about BOS and trying to raise awareness is something that I love doing! It is how I relieve my stress about the situation.  So here is what I do now when I get those comments that use to make me so mad…

“She’s so little!”… Yes! She has a rare syndrome called Bohring-Opitz.

“Are those real glasses?” …Yes! She has a rare syndrome called Bohring-Opitz

“What is that tube for?” … It’s for feeding her because she has a rare syndrome called Bohring-Opitz.

I know that people are not educated enough and so I am going to educate them about this syndrome EVERY chance I get.

As I continue to raise awareness please if you have questions ASK… Our world has grown up where everything is a secret.  We are told not to stare, do not point, do not ask questions, keep walking, etc.  WHY?? If we continue to do those things or teach our children to do those things then children who look “different” will ALWAYS look “different”.  If you ever have a question about Talynn ask me! I would love to tell you what I know about Talynn and BOS.  From now on, instead of saying “do not stare” and “keep walking” sag “look at those pretty glasses” , “look how adorable that baby is”.  We have got to change the way people look at disabilities.

Bohring-Opitz Syndrome will have its first awareness day on April 6th, 2015. This day was chosen because a BOS mom created the first ever Bohring-Opitz Facebook Support Group.  This group was created on April 6th and to honor that day we will have BOS awareness day.  Please join us with your support by wearing gold & denim.

Love,

Mommy of BOS ❤