Telling the child's story
Telling our son’s story
Parents of a baby son who was born with Arteriovenous Malformation (AVM) and had 5 brain surgeries begin the story of the start of his life, from pregnancy to his birth to the sudden emergency event. “That was the first like kind of break that happened internally where we’re sitting there and our baby is dying, that we know of now and nobody has even really seen this before. It humbled, to say the least.”
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“Noah is a trainwreck on paper but he is so much more than that.” A mother’s high alert vigilance and advocacy for 14 years
Andy, a diagnosis at birth. “I immediately asked, “what is wrong with my son?”
Mom, Natalie, introduces the story of her now 23-year-old daughter Emma.
Julianna’s beginning: Charcot-Marie-Tooth disease
Telling our son’s story
A Canavan mom on learning the diagnosis and hearing that there was nothing to be done.