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

Tuesday, January 31, 2012

Trisomy 18 Awareness

Trisomy 18 has been in the news a lot lately because of a special 3 year old little girl named Bella who has Trisomy 18. Bella happens to be the daughter of Presidential candidate Rick Santorum. Bella was admitted to a local hospital over the weekend for pneumonia, which caused Mr. Santorum to cancel some of his campaign appearances. Bella is doing much better today and her dad is campaigning again. News organizations have been featuring stories about Bella and Trisomy 18. This is a tremendous opportunity to raise awareness for Trisomy 18 and to give good information about what this chromosomal disorder is and is not. We in the Trisomy community are interested in having the public know that
1. Our children are children first...children who have a condition known as Trisomy 18.
2. Children with Trisomy 18 can live for months and years. Their life expectancy cannot be predicted at birth.
3. Children with Trisomy 18 do not live lives full of suffering. The idea that these children suffer is commonly cited by neonatologists and obstetricians although it this is not supported by medical literature or anecdotal experiences from the MANY Trisomy families out there.
4. Children with Trisomy 18 can indeed have a good quality of life.

For more information please see the following links:

http://www.trisomy18.org/site/PageServer?pagename=whatisT18_whatis

http://www.trisomyhelp.org/WHAT-IS-TRISOMY-.html


To view some of the current news coverage centering on Bella Santorum and/or Trisomy 18 see the following links:

http://www.thedailybeast.com/articles/2012/01/31/feeding-tubes-nicu-one-on-one-care-susan-hatfield-talks-about-living-with-his-trisomy18-baby.html -- this article was written by the mom of a 5 year old boy with T18.

http://bostonglobe.com/lifestyle/health-wellness/2012/02/01/bella-santorum-and-trisomy-care-has-shifted-for-genetic-disorder/k5ZH7Zxoi0q5hkJRsphs6M/story.html

http://www.pbs.org/newshour/rundown/2012/02/santorums-daughter-recovering-nicely-but-from-what.html

http://www.cbsnews.com/8301-504763_162-57368121-10391704/trisomy-18-in-spotlight-after-rick-santorums-daughter-bella-hospitalized/?tag=mncol;lst;1

http://abcnews.go.com/blogs/health/2012/01/29/what-is-trisomy-18/

http://www.washingtonpost.com/blogs/the-checkup/post/bella-santorum-has-trisomy-18-what-is-that/2010/12/20/gIQAxrOVcQ_blog.html

http://www.huffingtonpost.com/2012/01/30/trisomy-18-bella-santorum_n_1241671.html


To learn more about children with trisomy 18 and their families see the links under "My Blog List."



1 comments:

Victoria Miller said...

Thanks Jenny for keeping this running list of media coverage! Very helpful index! And love your message points!

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