Bipartisan, Bicameral Legislation Honors Child Lost to SUDC
(ROSELAND, N.J.) — NEWS: The SUDC Foundation applauds final passage of Scarlett’s Sunshine on Sudden Unexpected Death Act. This legislation was introduced by U.S. Senators Bob Casey (D-PA), Johnny Isakson (R-GA), Sherrod Brown (D-OH), Doug Jones (D-AL) and Dan Sullivan (R-AK) and U.S. Representatives Gwen Moore (WI-04), Tom Cole (OK-04) and Jaime Herrera Beutler (WA-03) to combat sudden, unexpected infant and child deaths. The legislation was introduced in honor of Scarlett Pauley, who was lost to SUDC in January 2017 when she was just 16 months old.
Sudden Unexplained Death in Childhood (SUDC) is a category of death in children over the age of one year which remains unexplained after a thorough investigation and autopsy. Most often, SUDC occurs in otherwise healthy children during sleep. Approximately 400 children are lost to SUDC in the United States every year.
“Scarlett’s Sunshine is named after a little girl who was lost to Sudden Unexplained Death in Childhood,” said Senator Casey. “We must do more to understand why certain infants and young children have died unexpectedly, and to learn what is causing these deaths. I introduced the Scarlett’s Sunshine on Sudden Unexpected Death Act to help increase our understanding of the causes of unexplained infant and child deaths and to help us develop new tools to prevent and reduce such deaths in the future. I am pleased that Congress has passed the Scarlett’s Sunshine on Sudden Unexpected Death Act and it is now law.”
“It’s wonderful news that the Scarlett Sunshine Act is now law. I thank the incredible advocates and other lawmakers who made this all possible. I send my love to every family who had to experience this heartache and painful losses. This bill was written for Scarlett Lillian Pauley and other children who were lost to SUID/SUDC and works to prevent these tragedies. I am ready to continue building upon this legislation to save lives,” Congresswoman Moore said.
“Scarlett’s Sunshine Act will finally provide the support our country needs to ensure that infant and child deaths are comprehensively investigated, and that data is not only analyzed to help the individual family with the most accurate diagnosis but also help future research efforts,” said Laura Gould Crandall, President and Co-Founder of the SUDC Foundation. “When your child dies, you are thrown into a public investigation system and you have no control over the tests being done on your child or the tests that are not being pursued. You often find out later, when it is too late. I am relieved to know that this new law will better support our country’s response to these tragedies for the families directly affected, and to support the better health of all children.”
“On January 8th, 2017, our lives were shattered when our beautiful, healthy, thriving daughter, Scarlett Lillian Pauley, went to sleep and never woke up. And we do not know why,” said Stephanie Zarecky and Ryan Pauley. “Losing a child is the single greatest pain we could ever imagine and living without answers magnifies the tragedy exponentially. We try every day to spread Scarlett’s Sunshine, allowing her memory to shine on and bring light to SUDC, the medical mystery that took her from us.
“We are so thankful her name will be able to live on in law and hope that one day no more families know the tragedy we have suffered. We are also so grateful to Senator Casey and Congresswoman Moore for their leadership on Scarlett’s Sunshine on Sudden Unexpected Death Act in honor of Scarlett and all of the children who are dearly loved and deeply missed.”
Scarlett’s Sunshine on Sudden Unexpected Death Act strengthens existing efforts to understand SUID and SUDC better, facilitate data collection and analysis, improve preventative efforts, and support children and families.
The SUDC Foundation is proud to have advocated for this legislation. In November of 2019, SUDC Foundation board members and Ambassadors headed to Washington D.C. to educate their congressional representatives on SUDC and the importance of the legislation. Scarlett’s mother, Stephanie, testified in front of Congress last year on the third anniversary of Scarlett’s death.
To learn more and support Scarlett’s Sunshine on Sudden Unexpected Death Act, please visit: sudc.org/advocacy/scarletts-sunshine-act
About the SUDC Foundation:
The SUDC Foundation is the only organization worldwide whose purpose is to promote awareness, advocate for research and support those affected by SUDC. The SUDC Foundation provides all services at no cost to families. Learn more: sudc.org.
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