Wednesday, January 1, 2014

A guest blog by another CCHS mom, Sarah Y.

 When Noah was first diagnosed with CCHS, it was so overwhelming.  There was literally nobody here to talk to that could understand everything we were going through.  Then one day I received an email from another CCHS mom.  Turns out she lives in the same city!  I was so excited.  We met in the lobby of Children's hospital.  Immediately I felt a kinship with her that I had not experienced with anyone else.  I realized she was going through everything we had experienced the year before.  Even though I wish CCHS on nobody, I am so glad we walk this road together.  

We are now trying to raise awareness of this rare disease.  For the first time, UAB is hosting a rare disease day event.  We have been interviewed for a local parenting magazine and NORD has allowed Sarah to write about our journey as rare disease parents.  I have included the link to her article.  

Thanks Sarah for sharing Madi with us and for being there for me.

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