My Nonprofit Reviews

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1 reviews

Review for Cornelia de Lange Syndrome Foundation, Inc., Avon, CT, USA

Rating: 5 stars  

I had a difficult pregnancy with my daughter, Lily. There were always concerns and doubts about whether she would make it or not. After what seemed like an eternity later, my little peanut was born and stayed in the NICU. After wondering what could be causing so many complications during the pregnancy, her little eyebrows gave her away; she had CdLS. The diagnosis was not an easy one to come to terms with. Doctors and geneticists were not able to give me answers as CdLS is so rare. However, they referred me to the foundation and it was a lifesaver. I called them and left a message and the nicest woman called me back, answering as many questions as she could. Not only was I able to get more clear answers about my daughter's future, but they also had such a positive outlook on everything. After hearing so many doubtful opinions for the better part of a year, it was refreshing to have someone with experience, ease my own doubts of what was to come. Receiving their quarterly newsletters also means the world to me. It reminds me that we're not alone. I owe so much of my sanity to this foundation.

Role:  General Member of the Public