Sunday, April 10, 2016

Making News

While we were on vacation, we got a message from our genetics counselor with an odd request (her words, not mine). The local newspaper, the Milwaukee Journal Sentinel, was doing a story on exome sequencing and looking for families to interview. We agreed without hesitation because we want to share Teddy's story and our experience with anyone willing to listen. We feel that sharing our journey could help others facing similar situations.

So, I did about a 30-minute phone interview while heading back to Las Vegas to fly home. We sent them some photos of Teddy late this week and waited patiently for the story to post online yesterday (at 9:30 p.m.)

We were a bit surprised to see this morning that Teddy made the front page of the newspaper, along with a huge family photo with the rest of the story. And one person already contacted me to get more information about the Facebook groups we've found. For me, that makes it absolutely worth including Teddy in the story.

Front page, lead story, charming Teddy.

Here's the link to the online version of the article:

There's also an interesting (at least to us) podcast where the reporters share a bit more that's not in the actual story:

The story is a follow-up on a Pulitzer Prize-winning piece done about 6 years ago on one of the first cases of exome sequencing to diagnose and treat an individual, which was done at Children's Hospital. They were pioneers in this type of genetic testing, and the Journal Sentinel covered the story originally and has continued to do follow-up pieces. A book One in a Billion: The Story of Nic Volker and the Dawn of the Genomic Age is being released this week about that first child whose exome was sequenced and the doors it's opened for others like Teddy.

I never thought my child would be on the front page of the largest newspaper in our state, but I'm so excited that his story is being shared with others. 

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