Today I am very thankful for the opportunity I have just been given. I was searching the internet for anything new on the Oculo-ectodermal Syndrome that Zachary has and came across a story of a family in Washington that has a 7 yr old little boy with the same syndrome. We have been alone all this time learning on our own about the problems, cures (none), causes, and research for this syndrome. I did a little more research and was able to locate the mother on Facebook (god I love Facebook sometimes). I sent her a message and she accepted my friend request and we have messaged back and forth a few times already. Our boys have so much in common. They are on similar meds and at similar points in their lives.
I gave this mom our genetics Doctors info so maybe they can get in touch with her and learn some more also. Our Doctor will be excited to hear about their little guy I just know it. Our Zachary has been put on the research of the syndrome while they have not YET. I am sure they will now though or atleast I hope so because the more patients they find with it the more they can learn and link things together. I do ask just 1 more thing, Dear God, please help us all through this journey and keep the boys as strong as they are and have been. They are beautiful gifts to us their parents and we are here to do anything and everything to make them live a normal life.
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