A type of anorectal malformation in which the anus is not present and the rectum, instead, connects to the perineum.
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“If I had waited another six months, my story wouldn’t be the same.” Katherine was born into a world shaped by loss. Her older sister, Gracie, was diagnosed with Fanconi anemia (FA) shortly after the family moved to the United...
People with rare diseases like FA often rely on a combination of healthcare programs and insurance coverage. Any change that reduces access to care or increases out-of-pocket costs can have real-world consequences for our community.
If you asked me for a defining memory of our journey, it might surprise you. Some of my most cherished moments were the long hospital stays — the time I got to spend one-on-one with Hunsley, free from the distractions of the world.