Help Jacqueline raise money

Restrictive Cardiomyopathy.

It's genetic.

Unlike most heart conditions, no amount of diet or exercise or lifestyle change will change the outcome. The heart will continue to slowly harden until it cannot pump anymore.

Today we understand what it is, what symptoms to look for, and how it's transformed our family. We know the lives it's claimed over the years - uncles, grandfathers, fathers. We know the lives it continues to touch in across our family - those who received transplants, those who tested positive, those who feel the symptoms, those with survivor's guilt.

(My dad's first real meal in the hospital post-transplant.)

But we did not know all of this when my dad and uncle went through heart transplants 7 and 8 years ago. They were headlong in uncertainty with hearts that could not keep them alive, while me and others watched their lives deteriorate to the point where walking was impossible. They were both fortunate enough - thanks to donors and an incredible team of doctors - to get heart transplants. They were the ones who uncovered the name of the disease, the symptoms, and a way to test for it for the rest of us. Many of us have been tested - some are positive and some negative, and more who have it are dealing with the symptoms. Only this time they are dealing with the full knowledge of the risks and where they are headed.

Me? I decided to not get tested until I had a baby boy. I'm asymptomatic and knowing would not impact any big life decision for me. Finding out if I have this gene is not about me anymore, it's about him - because boys are much more likely to experience the full force of this disease. This past year I went through the genetic counseling and genetic testing and thankfully found out I was negative. With tears in my eyes I held my little boy that night no longer wondering about the heart beating in his chest.

So today, please consider donating. For the organ donors, the family we've lost, the family we've kept, the family on the tumultuous path to pacemakers and/or transplant, and the family still figuring out their journey.

Go forth, do good.

(Year 2 of Big Al's Pizza team.)

(The fabulous Michigan family who helped me make a team during the virtual years.)