About Us

To live like Frankie means to find connection with all human beings through love and empathy; driving each of us to help one another. In Frankie's ten short years of life, he managed to impact anyone with whom he came in contact. There are stories of educators inspired to teach and learn differently, children finding support and inclusion, elderly experiencing companionship and aid, peers who learned showing your emotions is okay and healthy, doctors inspired by his will, cancer patients who found hope and connection, and entire communities moved to leave this world a better place than we found it.

Frankie continued this way of life even after experiencing three seizures; one of which caused a ten foot fall from a diving board onto concrete. He somehow recovered and was misdiagnosed epileptic. His fourth and final seizure stopped his heart at just ten years old. For four years we searched for answers along with medical professionals, but to no avail. His death was simply deemed Sudden Unexpected Death in Epilepsy. After four years of questioning, we learned Frankie had Catecholaminergic polymorphic ventricular tachycardia (CPVT);  a rare, genetic heart condition that causes deadly arrhythmias.

 Four years after Frankie's sudden death, 16 year old   Sammy died too due to a sudden cardiac arrest. In a miraculous turn of events, Sammy came back to life after over two hours of CPR and being pronounced dead for five minutes. He wasn't expected to make it through the day after his revival, but he did. Sammy was expected to be brain dead, but he wasn't. And so the story goes, at every turn in his recovery he defied the odds. After he was stabilized, doctors knew our family must have a rare heart condition because of the rare arrhythmia Sammy experienced. A genetics team stepped in and ran a Rapid Genome Sequencing DNA test on our whole family including genetic material saved from Frankie. The test revealed Sammy and his brother have Catecholaminergic polymorphic ventricular tachycardia (CPVT);  a rare, genetic heart condition that causes deadly arrhythmias.  Due to the extraordinary time Sammy received CPR, his spine did not get enough oxygen. Today, Sammy has incomplete paraplegia and is working around the clock to regain as much mobility as possible through intensive physical therapy. Sammy also suffered a traumatic brain injury (TBI) impacting his short term delayed memory, yet he returned to school and his advanced placement courses after missing an entire semester of school. His hard work has paid off and he will graduate on time! 

Jen, Frankie and Sammy's mom, has lived her whole life unaware she too has Catecholaminergic polymorphic ventricular tachycardia (CPVT);  a rare, genetic heart condition that causes deadly arrhythmias. A Rapid Genome Sequencing DNA Test revealed this fact while Jen and her husband, Craig, were caring for Sammy in the hospital after his cardiac arrest. Though Jen experienced fainting spells, and dizziness throughout her life, CPVT went undetected. It is truly miraculous Jen and Sammy are here today considering the first symptom of CPVT, a cardiac arrest, is usually a patient's last. Jen credits this fact to Sammy's innate zest for life he's possessed since birth. There is no other human we've known who lives with more curiosity and love for life than Sammy. Through all of the family's hardships, Sammy has been the pillar of hope. The family also credits Frankie with "pushing" Sammy back to the land of the living. In classic Frankie form, he gave all of himself to help another. Together, Frankie and Sammy inspired Live Like Frankie reminding us of our purpose on this earth; to smile like Sammy through the hard and happy times and live like Frankie by continuing his legacy of helping repair our world.