Spreading Scarlett’s Sunshine
Last fall, a little girl with big, blue eyes, a smile that could light up a room and a personality to match her name left her mark on history when Scarlett’s Sunshine on Sudden Unexpected Death Act was introduced into Congress. And last week, her spirit toddled back through the halls of the Capitol when it was reintroduced to combat sudden, unexpected infant and child deaths.
If passed into law, Scarlett’s Sunshine on Sudden Unexpected Death Act would supply grants to help states and municipalities improve data collection and death scene investigations related to unexpected infant and child deaths, promote safe sleep practices and ensure death reviews are completed for 100 percent of infant and child fatalities. Currently, there are no nationwide standards in the United States for investigating and collecting data following an infant or child death. This makes it often impossible to determine the causes of these deaths, and what strategies the country can implement to prevent these tragedies.
Scarlett’s Sunshine Act is bipartisan, bicameral federal legislation in the U.S. that was first introduced in the fall of 2018 but had to be reintroduced this spring when it did not pass in the previous congressional session. It was introduced by U.S. Senators Bob Casey (D-PA), Johnny Isakson (R-GA), Sherrod Brown (D-OH), Doug Jones (D-AL) in the U.S. Senate and Representatives Gwen Moore (WI-04), Tom Cole (OK-04) and Jaime Herrera Beutler (WA-03) in the U.S. House of Representatives.
This legislation is very important to me personally because I am Scarlett’s mother. Scarlett was a happy, healthy, thriving little girl until January 8th, 2017 when she passed away in her sleep when she was just 16 months old. We still do not know why.
Scarlett’s Sunshine Act was named after her at the request of Senator Casey, for whom I used to work. During my time working for him, I got to know Senator Casey as a doting father to his four beautiful daughters and a dedicated public servant with a devotion to issues involving children’s health. After we lost Scarlett to SUDC, the Senator and his wonderful staff wanted to find a way to help. They worked with other congressional offices and infant and child health advocates, including the SUDC Foundation, and Scarlett’s Sunshine Act was born.
The bill was given its name after Scarlett’s favorite song, “You are my Sunshine.” Since losing her, we have referred to our efforts to honor her and raise awareness of SUDC as spreading her “sunshine” in her memory, and this legislation allows it to continue to spread throughout the country.
The bill is also important to me because of my devotion to the SUDC cause. Through my work for the SUDC Foundation, as well as establishing the Scarlett Lillian Pauley Foundation with my husband, it has become my life’s purpose to care for Scarlett by working towards a future when no more children are lost to SUDC and no more families suffer the pain we do.
Like many SUDC families, the loss of our precious daughter is magnified by the fact that we don’t know what happened to her. And it is amplified by the fact that most people have never heard of the medical mystery that took her from us. In addition to the attributes of the bill itself, the greatest piece, at least for our family, is that it helps to bring a national spotlight to SUDC.
As more people learn about SUDC, it is our hope it will help more families to find the support we have found in the SUDC Foundation. And perhaps even more people will find it in their hearts to support the cause that is so dear to ours, not only for Scarlett, but for all the beautiful children lost to SUDC who are deeply loved and dearly missed.
If you would like to learn more about Scarlett’s Sunshine Act, please visit: https://sudc.org/get-involved/legislative-advocacy/scarletts-sunshine-act. We will continue posting opportunities for you to support this legislation on that page!