Morgan was diagnosed with CPVT after passing out on the playground just before her tenth birthday. Morgan – an active, loving, and beautiful little girl with a huge heart – pivoted from playing basketball and soccer to sewing, cooking, and playing the piano. Morgan passed away unexpectedly on April 8, 2017 at just fourteen years old. Her parents, Kerwin and Madelyn, are committed to helping other families with CPVT by powering research for better treatments and, ultimately, a cure for this condition.
Morgan was diagnosed with CPVT after a treadmill stress test, and was put on beta blockers – a medication that can help control the symptoms of CPVT, but that was not specifically designed to treat the condition.
“There is no treatment designed specifically for CPVT,” says her father, Kerwin. “Our bright, bouncy girl was transformed from the beta blocker side effects into a girl who had to take a four-hour nap every day after school. It was hard for her, and hard for us to watch as her parents.”
Morgan was also told that she couldn’t participate in any activities that raised her heart rate. She was a very active ten-year-old who played soccer and basketball, and also danced. “She pivoted into other hobbies: my mom is a seamstress, and Morgan took up sewing,” says Madelyn. “She also started playing keyboard, singing, and cooking. She was our Tuesday night cook in our home – it was Taco Tuesday every week.”
This was a huge adjustment for her and her parents. “There was a sense of, why did this happen to me?” says her mom, Madelyn. “We didn’t have any family history.”
But Morgan was incredibly resilient, and lived her life fully despite her diagnosis. She travelled all over the world – including to Japan, Nicaragua, and South Africa. “She was our lovebug,” says Kerwin. “She gave everyone the best hugs, all across the globe. If you were talking to her right now, she’d come up and hug you.”
In 2017, Morgan had a Sudden Cardiac Arrest. To this day, her family is not sure why. Her father and sister, Madison, found her and tried to revive her; her mother, Madelyn, learned that her daughter was
gone while at a conference across the country.
“Morgan went to the hospital after her SCA and we heard those words that every parent fears: ‘we’ve done all that we can do,’” says Kerwin.
Kerwin and Madelyn’s faith, family, and community kicked in and gave them strength. Within a year, they’d started a nonprofit in Morgan’s memory and honor to help others learn more about CPVT and
support CPVT research. “It’s not acceptable to us that other families could go through the loss that we did,” says Kerwin. “This is a rare disease, but it’s huge in our lives. We want it to be in the forefront of researcher’s minds.”
In 2018, A Piece of My Heart Foundation did a Gala at Morgan’s middle school – where she was just about to graduate eighth grade. With the donations, they purchased AEDs for all of the Middles Schools in the Pasadena Unified School District, and were able to cover their maintenance as well as CPR training for teachers and other school personnel. More recently, they also helped advocate for the Access to AEDs Act in front of Congress.
Since 2018, the Manning family has pivoted to supporting CPVT research. Their doctor, Dr. Michael Silka, introduced them to Dr. Shubhayan Sanatani, a top researcher in Canada and a Scientific Advisor at the SADS Foundation, who was – at the time – getting ready to start a database to learn more about CPVT. Over the past few years, Kerwin and Madelyn’s foundation has supported a permanent staff person at the registry. “We even got to visit the research clinic and see the incredible things they’ve done to help cure this condition,” says Madelyn.
“We have a huge amount of love for the CPVT community, and a determination to save lives,” says Kerwin. “We want others to know that family and community are so important. A diagnosis like CPVT can
divide families – especially when a family experiences loss. And we want losses, like Morgan’s, to be a thing of the past.”
“When we lost Morgan, she took a piece of our hearts with her,” adds Madelyn.
The Mannings found the SADS Foundation when they were looking for CPVT resources – and a “home” for this rare condition. “I would read each email that SADS sent out from top to bottom, and read all the
stories,” says Kerwin. “It was the only community for families like ours out there. It was a lifeline to have a Foundation that cared about us.”
Morgan is still the heart and soul of the Manning family.
“I remember after she learned how to sew, Morgan made me a tie for Father’s Day – it’s this huge tie with polka dots all over it,” says Kerwin. “I still wear it every year.”