Dancing in the Rain
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A Trisomy 18 Journey

Life is not about waiting for the storm to pass. It's about learning to dance in the rain. -- Vivian Greene

Wednesday, November 2, 2011

Small World

Jill and Lily with me and Julia
The Trisomy 18 world is truly a small world. One in 6000 babies are born in th U.S. with Trisomy 18. In raw numbers, approximately 1200 babies are born each year with T18. Of those 1200 babies, approximately 5-10%, or up to about 120, survive until age one. (It's important to note that this survival rate could be higher if more docs were willing to treat each child as an individual instead of as a diagnosis.) In my county of over one million people, I have yet to meet or hear of another family with a child living with T18! Anyway, meeting another T18 family is a rare treat. We were able to do just that last month. The Smith family, with 2.5 year old Lily, was on vacation and driving through our area. They were so kind as to coordinate with our crazy and unpredictable "schedule" so we could meet each other. Lily's mom, Jill, and I have been emailing for several months. She is the mom who showed me the supportive online groups of T18 families that I have found so helpful. She has also been working on a map of T18 families in the U.S. so we can better connect with one another.
Jill and her family were able to visit with us in our home. Lily is such a beautiful girl! I was so encouraged watching her movement and interactions! She is such a fighter, like all of our T18 little ones. Lily and her family shared some of their joys and their challenges in raising Lily.  I was thankful to hear how another family balances life with this unusual journey. A big, huge thanks to Lily's family for visiting with us and encouraging us. Sharing this journey with other families, even from a distance, makes a huge difference.  It truly makes us feel less alone.  To learn more about Lily and her amazing journey click here.


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