The Beginning
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The diagnostic odyssey to Tay-Sachs
Marfan Syndrome: He had 26 doctors and specialists and therapists. It was a free-for-all.
Andy, a diagnosis at birth. “I immediately asked, “what is wrong with my son?”
From diagnosis to death: “It was 8 months of an incredible psychological terrain.”
I convinced myself my job was to be competent. I was ‘at the table’ and it was a lot of pressure. It took a toll.
“I internalized that to be competent meant not to cry; You do what you think is needed to get good care for your child.”
Cardiomyopathy: My welcome to motherhood – dreams and hopes shattered.
Cardiomyopathy: A mom on arriving on the cardiac floor and finding community.
Undiagnosed: “28 years and we still don’t know exactly”
Tay-Sachs, Twin fathers and their diagnostic journey with their two children