COEUR D'ALENE, Idaho — In her three years of life, Grace Sayler has defied the odds.

She received what appeared to be a hopeless diagnosis as a newborn: Noonan syndrome, a rare condition that caused her to develop early hypertrophic cardiomyopathy, an abnormal thickening of the heart muscle. The condition is often fatal in infants.

Doctors told Grace’s parents that no research on the condition had been conducted in 20 years. Nothing could be done to save Grace, so her family should focus on enjoying their limited time with her.

Her mother, Honey Sayler, refused to give up.

There was hope, Sayler discovered, in the form of a chemotherapy drug being studied for children with Noonan syndrome who develop early hypertrophic cardiomyopathy.

“If we had known earlier, perhaps we could’ve star

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