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MCADD = Medium Chain Acyl-CoA Dehydrogenase Deficiency

This web site is dedicated to the memory of

February 5, 1995 ~ March 9, 2003



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!

 


"Packets for Parents" is a program that provides free newborn screening packets to expectant parents in the United States who are unable to pay for them. Certain restrictions apply, and quantities are limited to a specific
number of packets each month. For information please visit the resource library at savebabies.org


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