Kendall 
This is a personal story shared by a family who lost a child to Galactosemia. 

I am writing this today to stress how important expanded newborn screening is. The handling of these tests is just as important as the test itself. By not catching these newborns immediately, and informing the parents and pediatrician of positive test results in a timely manner the outcome can be devastating - I know because I have lived it...

My daughter Kendall was born on December 21, 2000. Kendall had her newborn screen done within 26 hours of birth. She was beautiful and we both went home within 48 hours of delivery. My husband and I were ecstatic with our little "Christmas" baby. Then Kendall starting becoming very lethargic and got sick. We received a call from our pediatrician that Kendall had classic galactosemia, but the phone call came too late - Kendall died on January 1, 2001.

I am extremely fortunate that I live in a state that screens for galactosemia. Unfortunately, due to a hospital error we didn't receive her test results for seven and a half days. The prompt handing of her screening, a switch to soy and prompt medical intervention would have saved her life.

Anyone who thinks that galactosemia is not a life or death situation from birth is kidding themselves.

I sit here today, without our little Kendall urging you to be sure your babies are comprehensively screened, and to watch for a timely result to those tests.

I am more than willing to speak with anyone regarding galactosemia and/or my specific situation.

Sincerely,

Trish Juranitch

Written April 2002 by Trish Juranitch
Mom to:
Kendall, died at 11 days (Dec. 21, 2000 - Jan. 1, 2001)
Laura, unaffected
Jackson, unaffected
Milwaukee, Wisconsin

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