1 in 10,000

      Two weeks ago Kevin and I took Ethan to the Providence Sacred Heart Medical center in Spokane for the counseling and blood draw for some genetic testing. They did a test called Micro-array analysis which told us something we didn‘t expect. The results were that of several (26) deleted genes in the 7^th chromosome which leads to a disorder called Williams syndrome. This is what we were told was causing his developmental delay’s.

      It has been a little bit of a roller coaster of emotions going on in our house hold, but in the end Ethan has always been who he is and even with knowing what he has. It hasn’t changed a thing about him. He has always been our social, happy, music loving, smiling boy and he always will be. Williams syndrome is a little hard to explain but we were told to watch a 20/20 video done on Williams syndrome which we found to be a good short explanation into the disorder. So I posted a link under the Links to the 2 part you tube episode if you get a chance to watch it you might find a small understanding about WS.

      We still however don’t know a lot about how this is effecting Ethan at this time. As we have read many times in all the information about WS this was something that just happened. Nothing could have been done to prevent or know it would happen it is just a anomaly that occurs in development in about 1 in 10,000 births. There are still a lot more tests to be done on his heart (which he was born with the heart murmur), Kidneys, calcium intake and thyroids. None of this testing will be any fun for Ethan since he still has the wonderful dislike for any doctor. As he gets older even more testing will be added to the list to make sure he lives a health life. So as we go through all of these wonderful testing phases I will be posting things we learn here on the blog along with of course some family fun stuff.