Fund in Memory of Lisa Havens

Living Well with Long QT. I was diagnosed with Long QT 34 years ago. In 1974, both my father and I were diagnosed with Long QT. I was only 7 years old. The information that was given to my parents was slim, but it kept me alive. Take beta-blockers daily and don't participate in competitive sports.

My heart aches every time I read someone's story of loss due to Long QT. My parents suffered the loss of a son less than a year before my birth. Evidence suggests that he died of Long QT. I worried that I too would loose a child to Long QT but the advances in research and treatment give me hope and peace of mind.

As each of my children were born, they were checked for Long QT. I only have one child that shares my condition of Long QT. My son Daniel was diagnosed as a newborn and has been under the care of a pediatric cardiologist ever since. He will soon be 8 years old and has an endless supply of energy.

As each of my children were born, they were checked for Long QT. I only have one child that shares my condition of Long QT. My son Daniel was diagnosed as a newborn and has been under the care of a pediatric cardiologist ever since. He will soon be 8 years old and has an endless supply of energy.

The information about Long QT has increased since I was a child. Danie's cardiologist has always given me clear, understandable information that makes much more sense than what I was told as a youth. Daniel may not be crazy about the fact that he can't join swim team with his sisters but I am grateful to have him alive every day.

I often share my knowledge of Long QT with friends and my children's schools. Unfortunately, people think it sounds like something that would afflict someone else's family and not their own.

My parents rejoice in the knowledge that I am healthy and that my son and his future children have access to medical care that will help them have long healthy lives. I am very grateful for all the doctors who have used their time and talents to further understand and treat Long QT.