Katelyn's Light
I love meeting people who are both interesting and inspirational. And I had such an opportunity when introduced to Tammy Bachman. She is Supermom of FOUR and helps her husband, Jeff, lead the Harvest Community Church near Montrose, CO. She also volunteers as a friend of CASA in the 7th Judicial District.
I wanted to pass along what I learned from Tammy’s family because the couple asks for your prayers for two of their daughters they call, “Sunflowers,” because of their need for light.
Many of us are familiar with the term jaundice. Some newborns are diagnosed with jaundice when their bilirubin levels are too high. Bilirubin is a waste product from the blood broken down by an enzyme in the liver. Usually some time in the sunlight will end jaundice. But that was not the case for 11-year old Katelyn and 5-year old Zoe. They do not have the needed liver enzyme and have been diagnosed with the extremely rare Crigler-Najjar Syndrome or (CNS).
CNS is a genetic condition in which Katelyn and Zoe will never outgrow. So every night the girls sleep under special blue lights and take medicine 4 times a day. Soon they will sleep on special mattress pads that will shine the same blue light on them! They also try to get as much sunlight as possible. You can imagine how tough this time of year can be given the lack of sunshine.
Without daily treatments, the sisters could quickly suffer brain damage, muscle and nerve damage and death due to bilirubin toxicity. There are less than 50 known cases in the USA, and less than 200 worldwide. They need more research to be done and they are helping doctors with that research.
Katelyn and Zoe will be the first Crigler-Najjar patients to receive an innovative treatment through Children’s Hospital of Pittsburgh called liver cell transplant. It involves partial irradiation of the liver combined with transplantation of liver cells, called hepatocytes. That means less stress on their bodies than a full transplant.
Together, with their big sister Shannon and Katelyn’s twin brother, Caleb, the Bachman’s ask we keep them in our thoughts and prayers.
Be the change!
Amy Gregorio
Your Mrs. International
www.katelynslight.com
Jeff and Tammy Bachman.
I wanted to pass along what I learned from Tammy’s family because the couple asks for your prayers for two of their daughters they call, “Sunflowers,” because of their need for light.
The beautiful Bachman’s
Many of us are familiar with the term jaundice. Some newborns are diagnosed with jaundice when their bilirubin levels are too high. Bilirubin is a waste product from the blood broken down by an enzyme in the liver. Usually some time in the sunlight will end jaundice. But that was not the case for 11-year old Katelyn and 5-year old Zoe. They do not have the needed liver enzyme and have been diagnosed with the extremely rare Crigler-Najjar Syndrome or (CNS).
Without daily treatments, the sisters could quickly suffer brain damage, muscle and nerve damage and death due to bilirubin toxicity. There are less than 50 known cases in the USA, and less than 200 worldwide. They need more research to be done and they are helping doctors with that research.
Katelyn and Zoe will be the first Crigler-Najjar patients to receive an innovative treatment through Children’s Hospital of Pittsburgh called liver cell transplant. It involves partial irradiation of the liver combined with transplantation of liver cells, called hepatocytes. That means less stress on their bodies than a full transplant.
Together, with their big sister Shannon and Katelyn’s twin brother, Caleb, the Bachman’s ask we keep them in our thoughts and prayers.
Be the change!
Amy Gregorio
Your Mrs. International
www.katelynslight.com
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