How did you find out that Katelyn and Zoe had Crigler-Najjar Syndrome?

   There were no signs of problems when Katelyn and her twin brother, Caleb, were born in March of 2002.  The day after being released from the hospital we returned for a check up.  That's when we found out that Katelyn was jaundiced and they admitted her right away.  It took many hours of blood testing before they figured out the problem. She was diagnosed with CNS the day they turned one month.

   Because we knew what to look for, Zoe was diagnosed when she was only 9 days old.  The early diagnosis was a blessing.  As far as we can tell the girls do not suffer from any developmental delays.
Will they ever outgrow Crigler-Najjar Syndrome?
   No. Crigler Najjar is a genetic condition. Katelyn and Zoe do not produce enough of a specific enzyme in their livers that is needed to breakdown bilirubin in their bodies. They can't outgrow it.
What would happen if Katelyn and Zoe didn't get their light treatment every day?
   Without daily light treatment the bilirubin in their bodies would rise to dangerous levels.  This would cause seizures, brain damage, and ultimately death.
How are Katelyn and Zoe doing?

   The girls are doing GREAT!  Katelyn is keeping up with her twin brother and older sister just fine.  She loves to sing, dance, and cheer.  Katelyn and Caleb are in 3rd grade.  Shannon is in 5th grade.

   Zoe is growing every day.  She has adjusted to the light treatment and sleeping with just a diaper.  She has been a blessing and we are glad she is here.

   Both girls were on the National Transplant List, but were taken off because the medicine they are taking has been very effective!
How can I help?

   Join us in praying for the girls.  We know that God is in control and we thank Him in advance for taking care of Katelyn, Zoe and our entire family.

 
Verses of Hope
"I praise you because I am fearfully and wonderfully made."
Psalm 139:14
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