I still can’t believe those words are real.
When Evelyn was listed for a heart transplant, we were told to expect a 6–12 month wait. Now, her cardiologists tells us that the latest data shows many Status 1A children around her size are waiting an average of 12–18 months.
Think about that.
That means more birthdays spent in a hospital room. More holidays connected to machines. More families living out of suitcases. More children depending on mechanical heart support just to survive long enough for a second chance.
This isn’t because medicine isn’t advancing. It’s because our children are being left behind.
Congenital heart disease is the most common birth defect, yet it remains severely underfunded and under-researched. While new therapies and technologies continue to improve outcomes for adults with heart failure, progress for children moves at a painfully slower pace. Too many kids are left waiting not because they aren’t sick enough, but because we haven’t invested enough in pediatric heart research, innovation, and transplant care.
Our children deserve better. No child should have to spend a year or longer living in a hospital, relying on machines to keep them alive while waiting for a heart.
They deserve more research. More funding. More clinical trials. More pediatric-specific treatments. More donor awareness. More urgency.
I want to see more funding for congenital heart disease research, pediatric heart failure treatments, stem cell research, tissue engineering, and technologies that could one day allow children to repair or even grow their own hearts. I want a future where children don’t have to rely on another family’s tragedy to survive.
No parent should have to pray for a miracle that begins with someone else’s worst day. We need to invest in research so there are more lifesaving options for kids like Evelyn.
Please don’t forget these heart warriors. Share their stories. Advocate for congenital heart disease research. Register as an organ donor if you’re able. Speak up for the children who can’t.
Because every child deserves the chance to grow up – not just the chance to keep waiting 
How You Can Help
Get your “Hearts for Evelyn” T-Shirt
Join our “Hearts for Evelyn” Facebook Group
What makes our partnership with COTA so great is that they will be with Evelyn throughout her lifetime. Every dollar donated to COTA in honor of Evelyn goes to transplant-related expenses. Thank you for being here with us for Evelyn.