Our Purpose

When they first said, "Your 17 year old daughter has hypertrophic cardiomyopathy", I immediately began researching everything I could get my hands on!  Five years of effort, and thousands of tears later, and with the loss of my sweet Ellen, I feel compelled to share my story to help other parents who need support as they are about to go through a similar experience. We tried all treatments, some conventional and some not so conventional.  Some treatments were very beneficial and some were not.  My purpose in writing about our experiences is to aid other desperate parents and to empower them.  Solutions (or partial solutions) to heart health challenges are available but they are difficult to find, understand, and apply.

Over the last five years I have been fighting a battle.  One that I never dreamed I would have to fight.  Nevertheless, there it was, staring me in the face.  I had no choice but to gear up, draw my sword and prepare for what was ahead.  This is to alert the reader that some solutions mentioned below have to do with not only the patient, but also the caregiver!  Caregivers tend to get exhausted, abused, misused, manipulated, their own health may fail, and marriages are tested.  All family members tend to suffer and some even get ignored. From articles and books, advice on insurance, and medical contacts across the US, the goal of this website is to provide you with the information to make the right choices in dealing with this devastating disease.