This is my little guy Deakon. Deakon is an amazing boy (as you can tell by that smile!) who happens to have Ring 18, like my little Emily. He and his family live in Davis County, Utah and his mom is putting on a 5K (3 mile) race in Deakon's name, where all the procedes will go to the Chromosome 18 Registry and Research Society. And I don't know if everyone knows, but the headquarters, the only Chromosome 18 Research Society in the world, just happens to be here in San Antonio, TX! It was what brought us to Texas-when Robby was offered a job my sister reminded us that the Registry was here, and that was enough for us to say yes! They are the only center that conducts research for the Chromosome 18 (other than Trisomy 18) So, I'm writing this post to encourage EVERYBODY to click here http://deaksrunforhope.blogspot.com/ and read more about Deakon and the 5K race they are doing over Deak's 5th birthday. If you live in Utah, go run this race for Deakon and Emily! And if you like to run, but don't live in Utah, you can be a Spirit Runner http://deaksrunforhope.blogspot.com/2011/01/spirit-runners.html Which is what I am doing. And if you don't live in Utah, and don't like to run, but would like to donate to the Chromosome 18 Registry and Research Society, click here https://www.chromosome18.org/Support/MakeaDonation/tabid/150/Default.aspx
This picture was taken last March, when we went to Utah for my grandpa's funeral. It was so fun having Lily and Deakon meet!
This was July 2008, 6 months before Em passed away, at the Chromsome 18 conference here in San Antonio. We brought Lily to meet the other kids there with Ring 18, and she was so alert, awake and happy. It was like she was meeting her best friends for the first time!
This picture was taken last March, when we went to Utah for my grandpa's funeral. It was so fun having Lily and Deakon meet!
This was July 2008, 6 months before Em passed away, at the Chromsome 18 conference here in San Antonio. We brought Lily to meet the other kids there with Ring 18, and she was so alert, awake and happy. It was like she was meeting her best friends for the first time!
3 comments:
This made me cry, especially the last picture. Sure grateful I know you and your family.
No words, just, that was utterly beautiful. And I too, like our sweet friend Jenny am in tears. I will be running with my Emarie for all our kids!
Hello my name is Joanne and someone jut contacted me on my moms group that has a baby with ring 18. Can you guys provide any support for this new mom? She's in shock right now and going through the emotions in the beginning. My email is jmon607739@aol.com. Please let me know where she can get more information. Thank you.
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