The first and third facts below are very pertinent to my son’s story, as Josiah’s left ventricle is very enlarged, and when they diagnosed his heart failure, it was only pumping at 27%. Now his LVAD does most of the pumping, but his left ventricle is still very enlarged.

I’m hoping the NIH funding cuts don’t last long, as they don’t yet know how the gene mutation that Josiah has is related to dilated cardiomyopathy.

Is it an inevitable defect? Is there something that triggers it? Knowing it is related to a gene makes Josiah question whether he would ever want to have children, as he doesn’t want anyone to suffer like he has. But what if it could be preventable?

Medically complex kids face a challenging life, full of deep and sometimes heartbreaking ponderings and choices, so forgive me if that last thought felt like oversharing. It’s one of the reasons why transplant kids are required to work with a mental health professional, as this is part of our everyday lives.

While we hope and pray for answers, we are also waiting for Josiah’s heart transplant. We were introduced to an incredible charity that helps families like ours raise funds and have started building the fundraising team.

3 reasons why we asked COTA for assistance:

1) COTA does not charge a transplant family, or patient, for its services.

2) 100% of funds raised in honor of COTA patients assist with transplant-related expenses.

3) COTA’s support for Josiah is available for his lifetime.

Thank you to COTA for this amazing gift of service, and to all who have already donated time, money, and have shared his story!

With deep gratitude,
Kim and Eric