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.