Family Health History Month is a national initiative that encourages families to share their medical history with relatives who may also be affected. We’re spotlighting stories of families for whom genetic testing, and talking about family health history, was crucially important – and saved lives in their families. To share your story, click here.

Jackie’s Story

Jackie lost both her daughter and her son before her family received a diagnosis of Long QT Syndrome.

“In May of 2003, my mom called and said she wasn’t feeling good, and her heart was beating really fast,” she says. “My stepdad took her to the hospital, where she was rushed to intensive care and diagnosed with LQTS. He said it commonly showed up in young people, and all of the sudden, after all these years, I had an answer.”

After her mother was diagnosed, Jackie and her family went through an extensive family genetic testing process called cascade screening to make sure that those who were potentially affected got tested.

Many of her family members had positive genetic test results, including Jackie, her sister, and her two grandchildren.

“People need to realize that LQTS comes from somewhere. Get genetically tested,” says Jackie. “For me, the only way to keep going is to help raise awareness and help save someone else’s child – that gives me fulfillment more than anything, and I think it’s what my kids would want.”

To read more about Jackie’s story, click here.

Lindsey’s Story

Lindsey’s sister passed away suddenly and unexpectedly in her sleep at 16 years old in 1995. Her parents were searching for a reason – and found answers in a Reader’s Digest article written by our founder, Dr. Michael Vincent.

Lindsey and her family flew from North Carolina to Salt Lake City to meet with him. Dr. Vincent evaluated Lindsey’s family and her sister’s EKG, and discovered that Long QT Syndrome ran in her family. “He was able to figure out that the gene came from my dad’s side,” says Lindsey, “and that I wasn’t affected, but that it had caused my sister’s sudden death.”

“Because of that diagnosis, we were able to let our cousins know that they potentially had the LQTS gene, and they were able to get testing, treatment, and live their lives fully and safely.”

To watch Lindsey’s story, click here.

Dick’s Story

Dick and his family didn’t know about SADS conditions until his oldest son, Andrew, died suddenly from Long QT Syndrome.

After Andrew’s sudden death, the family did a cardiac workup for his older sister and discovered that LQTS ran in the family. Dick knew that he needed to contact first-degree relatives – and make sure that everyone who might be affected knew to get tested.

“There were a ton of people to contact, and this was in the early days of the internet,” says Dick. “So the first thing I had to do was build a family tree of my cousins, track them all down, and mail them materials to give to their doctors because nobody really knew about LQTS at the time. I became the custodian of my family history.”

After a sudden death in the family, Dick said that he wanted to do something to make a difference – and getting his family tested was part of that process.

“Every person who walks a path that includes a sudden cardiac death of someone they love will have energy that comes from that,” he says. “Sometimes you get angry, and sometimes you throw yourself into awareness. Telling your family and getting them tested is something you can throw yourself into and use some of that energy on.”

Read more about Dick’s story here.

Nora’s Story

It took Matthew Lambert’s family seven years to hear the term “QT interval” … and during that time, he experienced 35 “fainting” episodes. Matthew was only three years old when he began to collapse suddenly with no explanation. And even “moving heaven and earth looking for any clue,” as his mom Nora says of their journey for answers, there was no information.

Then, many years later, they discovered a story in Reader’s Digest about Long QT and Dr. Michael Vincent, SADS founder and brilliant pioneer in the world of arrhythmias. Since that fateful find in a magazine in 1996, the Lamberts have been part of our community of families.

After meeting Dr. Michael Vincent, Nora and her family underwent genetic testing – and found a surprise in their genes.

“We went through a number of tests to find out if our LQTS was hereditary. Sure enough, the testing showed that not only did my husband have the gene, but I had it too, which was astounding,” she says. “My son had inherited them both, which was quite a dose for him to be carrying around. From there, we had a focal point as to what to do. Our whole family got genetic testing. I’m one of seven – two brothers were deceased, two other brothers were negative, but my two sisters and I were all positive.”

Read more about Nora’s story here.

Christy’s Story

In October of 2022, Matthew was taking a dinner break during a World of Dance rehearsal in New York City when he experienced Sudden Cardiac Arrest. It was his first symptom of an underlying heart condition.

“We found out that our 24 year old son had ARVC with the PKP2 gene mutation, almost three months after his cardiac arrest via genetic testing. Based on that information, it was recommended that our immediate family also get tested,” says his mom, Christy.

“We learned that our 16 year old daughter and my husband tested positive for the same gene mutation. Knowing this information allowed us to seek the proper cardiac testing and follow up treatment for our family to avoid another traumatic cardiac event. The safety net that genetic testing results have provided is, and will always be invaluable to us.”

Read more about Christy and Matthew’s story here.

Learn more about Family Health History Month here