Today is awareness day for Cornelia de Lange Syndrome (CdLS) a very rare multi-malformation syndrome that occurs because of a random gene mutation and is found in about 1 in 10,000 births. As most of you already know, Our amazing little guy Declan has this rare condition. Some features of the syndrome are low birth weight, slow growth, developmental delay, speech delay, as well as defining physical characteristics like a full head of hair, and well-defined eyebrows that meet in the middle, limb abnormalities and extra long eyelashes. WE are so blessed to have Declan in our family. Unfortunately CdLS is so uncommon that many doctors and therapists do not even know how to properly treat him, and others like him. It is so important to us that we raise awareness, one, so that more professionals can know and learn about these awesome kids and two, to help those who are undiagnosed be able to find the answers they need. Please, feel free to ask me about Declan, about CdLS. I love talking about him! We have found so much love and friendship in the connections we have made through the CDLS foundation and through various facebook groups. This is a hard journey at times, but one that we wouldnt trade for anything. In honor of Declan and his friends, if you would wear purple today in support it would mean a lot to us! If you want to post a picture on my wall I would love that too! I look forward to sharing with him someday pictures of all those who have supported him from the start! You all are amazing and we appreciate the great support you always show!
Posted on: Sat, 10 May 2014 13:19:34 +0000
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