by The Jones Family | Mar 25, 2022 | Awareness, Fundraising, Grief and Loss, Long QT Syndrome, Parenting
Deby and her granddaughter SaylorMarissa and her daughter SaylorDeby and her daughter Marissa “We celebrate Graeme every day in our family by persevering and sticking together, against all odds.” Deby’s Story I was 28 when I was diagnosed with LQTS in 1989. In 2000,...
by Sandy Cowin | Mar 10, 2022 | Brugada Syndrome, Genetic Testing, Grief and Loss, Raising Awareness
Sandy and her son JacksonSandy’s dad and her son Jackson This Heart Month, volunteer Sandy Cowin made a huge impact through sharing her story with her local news station, Spectrum News 1, which broadcast her story and the SADS warning signs across the state of...
by Karen Peck | Mar 7, 2022 | Fundraising, Grief and Loss, Raising Awareness, Raising Funds, Sudden Cardiac Arrest
Brian was a junior and on the dean’s honor list at the University of Wisconsin-Madison, studying biomedical engineering and computer science. He truly loved his college experience and formed an amazing second family away from home. We are comforted knowing he was the...
by Sam Becotte | Mar 2, 2022 | Awareness, Fundraising, Grief and Loss, Long QT Syndrome, Raising Awareness, Raising Funds
Lyla, Sonny Jude’s sister, at the pancake breakfast My son, Sonny Jude, went unresponsive (stopped breathing and his precious heart stopped beating) at six months old. His babysitter saw this and performed CPR and resuscitated him. It was then we...
by Alan London | Jan 11, 2022 | Fundraising, Grief and Loss, Long QT Syndrome, SADS Spotlight
In 1997, my wife and I had three kids. Our son Michael, who was eleven, had fainted twice. The first time, it was explained away by the E.R. and his pediatrician as a vasovagal episode from unusual activities. The second time, he got an EKG and was examined by a...
by Kathi Blum | Jan 4, 2022 | Fundraising, Grief and Loss, Long QT Syndrome, SADS Spotlight
In 1999, we got a phone call on a Friday from our son who lived on a college campus where his sister also went to school. We were on vacation. He said that his sister had passed away – he wanted to tell us before the police called us. Nobody knew why she had passed...
