This picture was shortly after Evelyn’s Berlin dressing change the other day. Dressing changes are usually somewhat painful for her, especially because her skin is so sensitive.
But something that continues to amaze me is how much this girl has learned throughout this journey.
At just 6 years old, Evelyn has learned to advocate for herself. She teaches people how to do her dressing changes, knows how to silence her alarms, knows exactly which wire and lead goes where on her body, understands what her medications do, and knows what all of the machines around her do and why they’re there.
She knows her body. She knows her equipment. She knows her care.
For a 6-year-old, her medical knowledge is incredible, but more than that, she has developed a level of confidence and self-advocacy that is far beyond her years.
She never should have had to learn any of this. A 6-year-old should be worrying about toys, school, and playing with her friends, not Berlin Heart alarms, dressing changes, medications, and wires.
Yet here she is, 345 days later, still teaching the people around her a thing or two. 
I am so incredibly proud of this girl. 
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.