We have felt the love, support and prayers of so many as we have been through these past couple of years. Many of you have asked if there was anything you could do, and here is something you can do:
Please enjoy some food at any California Pizza Kitchen in Utah on November 7th and 8th 2012 and mention that you are there to support Sotos Syndrome. 20% of the proceeds will go to the Sotos Syndrome Support Association.
Sotos is very rare affecting an estimated 1 in every 15,000 -20,000 births, so the chances of interacting with others with Sotos are very slim. This also means that most of Lucy's doctors have never even heard of Sotos, let alone ever dealt with a patient who has Sotos.
When Lucy was diagnosed, her geneticists told me about the Sotos Syndrome Support Association, and as luck would have it, their annual conference was just two short weeks later... in Vancouver Canada. It was a whirlwind getting all the arrangements made to get there. I am so incredibly grateful that we got everything together and made the trip. There are so many things you can learn from doctors, nurses and hospital staff and there are so many things you can learn from the internet, but being able to learn from other individuals with Sotos and their families and the doctors who have dedicated themselves to studying Sotos is something else.
When I walked into the conference, all of a sudden, we belonged, the other kids even looked like Lucy. Many of the other moms would stop and gasp and then want to hold her, it was like we had turned back time and they were looking at their own baby. They have shared their baby photos and it is fascinating how much they look alike.
As I attended the classes and met with the doctors and socialized with the other families, so many things started to fall into place and make more sense, the whole picture became more clear.
Needless to say, I love being part of this network.
I feel so much more prepared and supported. By supporting the SSSA they will be able to continue to provide these services.