Wednesday, February 27, 2013

Rare Disease Day

February 28th is Rare Disease Day.  This day is important for our family, because all 4 of our children have a rare disease/syndrome.  

It is important to us that you know Kayli has been discriminated against because she has a rare Trisomy Syndrome.  In the beginning, we were alone in the journey, and felt deflated every time the high risk ob told us our daughter was deemed to die.  Many dr's in Kayli's past have blatantly chosen not to treat her, or have harmed her simply because they do not know about her syndrome.  Kayli is here.  She is worthy of life, and of sharing her life, just as our boys are. Every child, no matter their abilities, deserve love, dignity, and hope.  Every Family needs support, and some families who have a loved one with a rare disease have to look harder and farther to find someone who understands their journey as they do.   

Bringing awareness to rare diseases/syndromes spreads empathy, empowerment, hope, unity, and networking opportunities for research.  When any one of us stand alone, it is easy to feel overwhelmed, easily deflated, and  stressed with the unknowns.  When others on a similar journey join together, they are able to combine the resources, information, and hope.  With awareness comes compassion, support, information, better understanding, love, and hope.  

If you see someone who is supporting Rare Disease day, take 5 minutes to ask them about their loved one with a rare disease or could be the connecting piece to their network of hope. <3 

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