Legacy is defined as the long-lasting impact of particular events or actions taking place in the past or in a person’s life. I have been thinking a lot about that word recently. On December 5th, we had the first Andy Larson Memorial Concert. Our featured artist, Will Liverman, along with his accompanist, Jonathan King, gave us an amazing night that will never be forgotten. A tradition has been started that will honor not only Andy’s legacy but that of so many children whose lives were cut short.
Today’s guest, Jackie, thinks a lot about her family’s legacy as well. Before she was born, her family suffered from epilepsy. Although many members of Jackie’s family had seizures, no one had ever died from them and I doubt Jackie even thought that was possible until the day she lost her oldest son, Jimmy. She worried then, that the doctors were missing something and that Chrissy might die as well. 3 years later, Chrissy did die, only 8 months after giving birth to her second daughter.
In a sad twist of fate, 10 months after Chrissy died, Jackie’s 75-year-old mother was rushed into the ICU with a heart condition. Doctors explained to Jackie and her family that her mother had long QT syndrome, an electrical abnormality in the heart that can result in fainting, drowning, seizures, or sudden death. A light bulb went off in Jackie’s head. Jimmy and Chrissy died from long QT syndrome, not epilepsy. Every member of Jackie’s family who had seizures had long QT syndrome as their cause. The discovery was too late for Jimmy and Chrissy, but it has saved so many others in the family.
After losing both of her children, Jackie knew that she was now living her life for all three of them. She needed to help create their legacy. Over the past 20 years, Jackie has done just that. She works on the podcasts ‘Bereaved, but Still Me’ and ‘Heart to Heart with Anna’ and hopes to start her own podcast about long QT syndrome over the next few months spreading education and awareness of this treatable condition. Jackie wants her family’s legacy to help prevent others from experiencing her grief and pain.