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We are the parents of Sarah Ann Hall. She is a beautiful,
active two year old. She is learning to go potty and do puzzles.
She loves to watch Blues Clues and she can talk like the little
puppy. She carries a doll all over the house and worries when she
loses their bottles or shoes. She loves to swing in the baby swing
in the tree in the backyard. She likes to jump in at the pool and
play in the water. She is the most precious thing, next to our other
children, that we have ever known.
Sarah died on July 30,2000. She died of a condition
called Medium Chain Acyl-Co-enzyme A Dehydrogenase Deficiency, one
of the many Fatty Oxidation Disorders that makes it impossible for
them to use the fatty stores they have for energy. How can we not
have known that Sarah had a fatal condition from birth? Sarah had
NO symptoms until the morning of her death. She appeared to be a
totally normal, healthy child. She had an acute episode brought
on by the common cold or flu. We rushed her to the hospital in the
ambulance. We, and the doctors, were completely shocked as we watched
her slip away from us. Even when she was gone, the autopsy could
not give a cause of death until 3 weeks later, when genetics tests
were returned, and we finally knew Sarah died from MCAD.
MCAD usually affects children from the age of birth
to 2 years. If you have a child of this age, get them tested now.
TEST YOUR CHILD!!! I only wish someone had told us to have
Sarah tested. Ask your pediatrician and don't take no for an answer.
If you need help, call our pediatrician, Dr. Holly Bondurant, 573-874-3300.
She is at the Boone Clinic, 401 Keene Street, Columbia, MO. There
are two websites about this at www.fodsupport.org and www.savebabies.org.
There are two large labs that complete the testing for newborns
for about $25 per test. The Supplemental or Comprehensive Newborn
Screening (CNBS) test for 30+ metabolic disorders may be completed
by Baylor University Medical Center in Dallas, TX at (800) 422-9567
or by Neo-Gen Screening Services in Pittsburgh, Pennsylvania at
(866) 4NEOGEN (*see more info on FOD website under Medical Info/Diagnostic
Labs).
We need your help to educate parents about this
disease. We would like for you to make parents aware that screening
for metabolic disorders is possible. It is being screened for in
many other states. Someone must tell parents to screen for these
disorders. We would have if we had known it was important. IT
IS IMPORTANT! Parents should have it done in the hospital as
a newborn. If you know someone who is having a baby, tell them.
IT IS IMPORTANT!!!
We need your help to get the laws in the State of
Missouri changed to include all metabolic disorders to be included
in the ROUTINE COMPREHENSIVE NEWBORN SCREENING. If Sarah would
have been screened as a newborn, her MCAD would have been detected
and we could have treated her with medication and diet. She could
have lived a normal, healthy life IF she would have been tested.
The State of Ohio is beginning this screening now and hopes to help
almost 1 in 1,200 newborns by detecting these disorders.
We are asking that Doctors recommend Comprehensive
Newborn Screening for the 30+ metabolic disorders. It is the RIGHT
THING TO DO to advocate to parents to have their child tested. Please
do the RIGHT THING beginning today!!!
We are praying for you,
John and Carol Hall
Paris, MO
homesw@mcmsys.com
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