Friday, January 31, 2014
This gorgeous little boy is Cai. He lives in Wales. He has Vici syndrome. Yesterday I got to talk to his wonderful mom Micaela. We talked for over two hours about our beautiful angel children. It is amazing how much Cai and Lila are alike. It has been so amazing to meet Micaela and her wonderful family. I had not previously met another family whose child was still alive with Vici syndrome (well, I did meet a family whose child had a variant form) and especially since he is one year older than Lila, I didn't know of any who were older. He has gone through so many of the same experiences that we have. He also has gone through experiences that I believe that we are just starting. It was so great to talk to Micaela and hear what the doctors in the UK are doing for Cai and how that might benefit Lila. It was also fun to hear about his little personality. In some ways he is far less affected then Lila. He even learned how to wave goodbye at school! It is just amazing to me that he and Lila are considered on the less severe side of the syndrome. I guess it just reminds us how lucky we are to still be able to cuddle our babies. It truly has been a sweet gift to meet this family.