The year 1987 brought an unexpected tragedy to the Osterhout family when their son Matt, age 17, died suddenly. As part of his regular routine, Matt had jogged from his home to work. However, minutes later he was gone. Matt’s autopsy did not reveal an explanation, but his death began a journey of discovery for remaining family members.

At approximately the same time in Salt Lake City, Dr. G. Michael Vincent was beginning to study cases of sudden cardiac arrest and in the early 1990’s, discovering the first Long QT mutation and founding the SADS Foundation. However, another decade went by before the Osterhout family would connect with the SADS Foundation. In 2001, the unbelievable happened again. Britni Osterhout Cooper (Matt’s sister) died suddenly leaving a husband and two young daughters, Quincy and Kennedy behind. The autopsy offered no clues to the cause of death.

Suspecting the deaths of her two children were likely genetic, Pam Osterhout began her relationship with the SADS Foundation. Pam attended her first SADS conference in 2001 and learned about the diseases that could cause sudden death in the young. She learned of treatment options, pros and cons of EKG diagnosis and the importance of documenting a family pedigree. Pam was tested for Long QT mutations but all tests were negative. A genetic answer for the Osterhout family was not yet known.

In January 2013, Kennedy, age 17, experienced a sudden cardiac arrest at school. Immediate and continuous CPR by her teachers saved her life. For the first time, the family was able to submit a sample for comprehensive genetic testing. DNA testing combined with validation by the Mayo genomics lab confirmed a diagnosis of CPVT.

Pam is the silent carrier passing it on to both of her children. Kennedy is doing well with continued beta-blocker medication and the implantation of an ICD. Her sister Quincy is protected with beta blockers. Extended family members are now being tested for the mutation. It’s been a 25-year odyssey for the Osterhout family, but with the increasing expertise of the medical community and the invaluable support of the SADS Foundation, the youngest generation may move forward with their lives with knowledge and preventative treatments. We are thankful that Pam, Kennedy and Quincy are part of our SADS family.