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Alexis'
MCADD Story
Alexis
had just turned 8 years old when a silent and deadly killer
called MCADD swiftly took her life. Her "Birthday Girl" ribbon
still hung on her bedroom door. She had a 5 month-old baby sister
that she had been wishing for ever since she learned what a
baby sister was.
Alexis
had no previous symptoms or serious illnesses, and there was
no reason for her family to think she was anything but perfectly
healthy. She
led a normal, active life as a second grader at Southeast Elementary
in Parkville, MO. She took gymnastics and played soccer and
softball. She loved her family, and she loved her life.
Alexis
stayed home from school on March 6 with the stomach flu. The
next morning she was found in her bed, unconscious and unresponsive.
Rushed
by ambulance to the PICU at Children's Mercy Hospital in Kansas
City, her condition continued to worsen. She was having seizures
in her brain, which was collecting fluid and continuing to swell.
Her blood pressure dropped and her heart raced. There were problems
with her liver and kidneys.
She
didn't move. She didn't talk. She didn't cry. She didn't wake
up.
The
doctors had no answers. They pumped antibiotics into her system.
They did everything they knew how to do. And then, finally,
they told us to pray.
She
was put on dialysis early Sunday morning, two days after she
was brought to the hospital, but by mid-day, after her brain
continued to swell even more, the neurologists performed additional
tests and our Alexis was declared 100% brain dead.
That
was when the bottom dropped completely out of our lives. That
was when all of our hopes for her recovery left us. We knew
she was with God and we had to let her go. Alexis
was taken off life support that day.
For
such a little girl, Alexis Nicole Knapton left huge footprints
in the hearts of everyone who knew her. She had changed many
lives for the better because she lived.
Because
she died, we now know about MCADD and we want to share that
information with as many people as possible, in the hopes that
other children like Alexis, with undiagnosed MCAD deficiency
(MCADD), will never have to go through what she did.
We
want MCADD children to live long, healthy, and happy lives.
PLEASE
read all the information on our website, and if your children
have not been screened, ask your pediatrician to do it. You
can have your kids screened for 30 disorders, including MCADD
for about $25.00.
There are approximately 55 diseases currently detectable through
screening. At the present time, the same filter paper blood
spot specimen can test for all of them (using several different
screening methodologies and equipment). The cost is as low as
$95 for screening for all 55 disorders.
No
matter what state you live in, you can get this done.
The
information on this website will tell you how and will point
you to other web sites for more information about MCADD and
supplemental newborn screening.
We
hope you find this information helpful.
It
could save your childs life!
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