THE BLOG
11/19/2014 03:12 pm ET Updated Dec 06, 2017

We're Living Every Parent's Worst Nightmare. Here's What You Can Do To Help.

When we laid our 2-year-old daughter Savannah down to sleep on April 3, it was a seemingly normal night for a seemingly normal child.

Nicknamed "Godzilla," she spent her days tearing through the house like a tornado of enthusiasm and curiosity, throwing things everywhere, laughing maniacally as she wove her way deep into our hearts; during quieter moments, she'd stand across the room and blow kisses at you until your arm was sore from returning them. There was zero sadness in our lives, no sense of illness, no foreshadowing of what was to come.

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But when we looked in her crib the next morning to wake Savannah for breakfast, we discovered every parent's worst nightmare.

As you can imagine, when coroners and police showed up and words like "autopsy" invaded our day-to-day reality, things got very difficult for two people who had simply wanted to be loving parents. We tried our best to keep things positive, and Larry and I have been on the receiving end of such incredible care and compassion from so many people. Much has been done to help us get through these past seven months, and we are eternally grateful. But people still ask: What can I do to help?

After months without answers or a blueprint of what to do next, Savannah's cause of death has finally been labeled: Sudden Unexplained Death in Childhood (SUDC). But this provides more questions than answers: What caused it? How can other parents prevent it? How can we stop it?

If the lack of answers to these questions bothers you as much as it does us -- particularly in the context of the most precious commodity we have, our children -- well, this is where you come in. If we all want to stop Sudden Unexplained Death in Childhood from happening to other kids, we need your help. Please read this post, share it via social media, and then make a simple phone call on Savannah's behalf.

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SUDC claims the lives of approximately 200 children in the U.S. each year, according to the SUDC Foundation. And although no one knows why they die, there are striking similarities in their deaths. Unfortunately, there is not enough awareness about or data on SUDC for researchers to be able to properly study cases like ours to try to find a cause. But there is currently a bill in Congress that would change that.

Senate Bill 2746 is the Sudden Unexpected Death Data Awareness and Enhancement Act. It is no-cost legislation that would create protocols for SUDC death investigations and autopsies -- so that enough data can be collected to hopefully find a cause and eventually a cure.

The bill is endorsed by a gazillion organizations and has bi-partisan support. In fact, the bill even passed the House of Representatives in September unanimously (when does that ever happen?!). But as you can imagine, SUDC's obscurity robs it of the "public relations" urgency that brings eyeballs to other legislation. And if the bill doesn't get to the Senate floor for a vote before the end of the year, the entire process has to start over. The only way it will get to the floor is if Senators across the U.S. know that their constituents care about this issue.

So, I'd like to ask you to make a call for Savvy:

1. Go to this site to easily find the phone numbers for your state's senators' offices.

2. Call their offices as soon as possible and ask that they co-sponsor S.2746.

That's it. It should only take a minute to make the call and help support this first step in stopping these types of child deaths.

If you'd like to learn more about the bill before making a call, here is a link to the SUDC site with a fact sheet, list of endorsing organizations, etc.

As people who so dearly loved Savannah, we crave answers. As parents, we find ourselves hesitant to talk about SUDC -- we don't want to scare other parents, and there is no "put your children to sleep on their backs" or similar call to action that will make you feel in control and able to shield your little people against SUDC. All we know for sure is that it can happen to your family tomorrow, but the odds are that it won't.

Viewed through that prism, SUDC isn't just something that chose our daughter's number out of some horrific lottery. It is a threat to anyone and everyone who has a young child in their lives. And when you consider that, the lack of study on SUDC until now is mind-boggling.

So please, think of our Savannah, think of your own kids, and make that call to your Senator. Then, pretend that Savvy is blowing you one of those kisses in thanks. Maybe, just maybe, we can all start getting some answers.

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Update: The Senate this week passed the ‪#‎SUDC‬ bill unanimously! Now, it heads back to the House for a vote on the amended language. Fingers crossed!

Thank you to everyone who read this post and took the time to call on Savannah's behalf, or shared the story to spread awareness. For those who would like more information, please visit this site (http://www.sudc.org/) and click on "medical/forensic info."

As many of you know, our own personal journey since Savannah passed away has yielded the "Stolen Moments Fund," our attempt to celebrate Savvy's life by bringing unexpected joy to a little girl and her family. This weekend, we will be heading out in search of the recipient, who will be selected at random somewhere in the U.S.

You can learn more about the Fund here (https://fundly.com/savannah-s-stolen-moment-campaign) or follow the events of the next few days on Twitter (@SavannahsFund) or Facebook (https://www.facebook.com/profile.php?id=100008435075220). In addition, we are encouraging all parents to get out with their kids this weekend, make some spontaneous memories, and enjoy what you have to the fullest.

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