Meet Gilbert through these words from Gilbert's parents :
"Hi, my name is Gilbert! I spent the first 84 days of my life in the CICU/CPCU at the Children’s Hospital Anschutz campus. While I was there, we learned I have Barth syndrome, which is an ultra-rare mitochondrial disease that affects my heart. Thanks to the amazing care of the heart failure team, I became strong enough to go home with my family. I did well outpatient for a year, but then my heart failure started to get worse. I went back to the CICU in March and had surgery to get a Berlin heart VAD implanted and I am now listed for transplant. My family and I are so grateful to everyone at the Heart Institute who has been taking care of me along this journey!
We are so honored that Carly will be biking for Gilbert since she has been “riding” with us since our first day at Children’s! She was one of the first doctors we met in the CICU after Gilbert was airlifted from his birth hospital and she was there the day we returned to the CICU 15 months later when his heart failure was worsening. We will be forever grateful for Carly’s compassion and the way she supported us through some of the hardest days we have ever experienced."
Your donation to the courage classic will help support research, education and quality improvement initiatives focused on decreasing mortality and improving the outcomes and quality of life of patients with CHD. It will also go toward programs that help support our families as they navigate this emotionally and physically stressful journey.
