Voices Across America

Turner Syndrome: “I’m not going to let you die”

Madison

State: Kentucky
Congressional District: KY02

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Diseases

Endocrine Disease, Heart Disease, Rare Disease, Reproductive Disease

Issues and Challenges

Madison has encountered: Rare / Underserved Disease, Disability, Invisible Illness, Medical Discrimination

My Story

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, 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.

My Motivation and Inspiration

Becoming a psychologist to medically complex children, and wanting to further research between this psychological, social, and physical aspects of congenital heart disease.