“I’m Not Going To Let You Die”
July 11, 2022
Author: Madison Shannon Madison Shannon Aortic Coarctation
Hi I’m Madison! At birth I was diagnosed with a rare disease called Turner syndrome, less than 2% survive birth. I was also diagnosed with aortic stenosis, aortic coarctation, mitral valve regurgitation, and pulmonary hypertension. When I was 4 I went into congestive heart failure.
Back in December I went through my third open heart surgery. Afterwards I went into cardiogenic shock, and my body began to shut down. I was dying and I knew it. Ventilated and unable to speak, I wrote “die” 3 times, asking if I was going to. One of my nurses held my hands and looked me in the eyes and said “I’m not going to let you die, you are not going to die.”
Throughout my life, I have advocated for more research and funding for rare diseases, as well as accessible healthcare, and accommodations for people with medically complexities during covid.
Sign up for updates straight to your inbox.