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Saturday, April 28, 2012

Bella Santorum's Impact on the Trisomy 18 Community

I was quoted in an article on Politico on 4/14/12!   Juana Summers (the reporter) did an awesome job of posting a NON-POLITICAL piece by interviewing several different people and perspectives and showing how Rick Santorum's daughter, Bella Santorum, has helped make Trisomy 18 a more widely-known disorder.  Of course, Santorum-haters used the article to attack him, Bella, and trisomy parents, like myself.

Bella Santorum's Fight - By Juana Summers on Politico
Here's my part in the article:
“A couple years ago, nobody knew what trisomy 18 was,” Susan Budd, the mother of a 2-year-old who has the chromosomal abnormality, told POLITICO. “Now, when I’m out and about and when somebody will ask me about my daughter, they’ll see trisomy 18 and they’ll say, ‘Oh, isn’t that what Rick Santorum’s daughter has?’ So Bella Santorum has done a lot for trisomy awareness in a very positive way because I think that more and more people are seeing that children are living with it.”
Budd – a mother of five including 2-year old Rebekah, who also has the disorder – said during her pregnancy several years ago, “if you typed trisomy 18 into Google, everything that you’d pick up would be negative,” but that now – partially thanks to the Santorum family – there’s a greater awareness and more resources for families like hers, impacted by the rare condition.
Without resources to turn to, she started a Facebook group that now boasts nearly 1,000 members and also keeps a blog about her daughter’s life.
“During the pregnancy and early on, my local contacts and my online community - that got me through things,” Budd said. “Now, I’m at the point where Rebekah is fairly healthy and stable, and so I spend a lot of time helping other families that are just beginning this journey, or who have never known that there is a big community to help them.”
Budd’s problem is less common now, after Santorum’s decision to step off the campaign trail – twice – to be with his ailing daughter made national headlines.
Read more: 

The article made it to another blog where I was re-quoted!
How Bella Santorum Had a Positive Impact on Families With Sick Children by Laura Donovan

I wish I could get our story out there even more and help share HOPE for trisomy kids!

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