Newborn Test Saves Child with Rare Disease - WJBF-TV ABC 6 Augusta-Aiken

Newborn Test Saves Child with Rare Disease

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North Augusta, S.C. - Shortly after giving birth to twin girls, a North Augusta mother discovered one of her daughters will need to eat a vegetarian diet in order to live.  She and her family opened up to News Channel Six about the disorder that now consumes their lives and tells what ultimately saved her daughter's life.

Madison, who was born just two minutes prior to her twin sister Mackenzie, talks and plays like a normal kid.  But her lifestyle is far from how an average one-year-old lives.  She does not have the freedom to eat every meal on the market and coming in contact with germs can mean a trip to the hospital.  

“Down Syndrome kids have the extra chromosome whereas Madison is missing one,” said David Braddock, the twins’ father.

Braddock and his fiancée Victoria Prater were coming to terms with raising twins when a phone call with newborn screening results changed their lives.  The couple learned that Mackenzie's results were normal, but Madison tested positive for Gluetaric Acidemia Type 1 or GA 1, a rare genetic disorder.

“It's basically where the patient's body cannot break down protein,” said Prater.

At just two weeks old, Madison was forced to become vegetarian.  While most people must have protein to live, Madison simply cannot.

“Everything she eats is measured out on a scale.  She is allowed 11 grams of protein from food a day right now, so we have to break that up between each mean and snacks.  She will never be able to eat meat or dairy.  She can't have a slice of pizza.  She can't have cheese.  She can't have pepperoni.  She can't have chicken nuggets,” Prater said.

Madison's diet consists of three medicated formulas and snacks like plain Cheerios.  She can also have small doses of bread, potato chips and even chocolate.  McDonald's French fries are even healthy.  But there is also a lot to keeping Madison healthy.  Medicine, coupled with countless trips to the doctor for blood work once a month, dietician check-ins at least twice a week and physical therapy keeps the family busy.  While most kids can tough out sick days like a common cold, Madison must be admitted to a hospital.

Prater said of a trip to the hospital in November of 2013, “Her red and white blood cells counts were extremely low and her platelets were critically low.  They wanted to do a platelet transfusion and thought that she had leukemia.”  

Madison and Mackenzie turn two-years-old March 7 and unless there is a setback, Madison is healthy.  Victoria and David say anyone can be carriers of GA 1 as they were, so the best thing to do makes sure all newborns get the screening.

Braddock said, “It should be a national mandate that all 50 states do a newborn screening.”

The family has been working with the Greenwood Genetics Center in South Carolina, where they receive canisters of formula for free.  Braddock said his fear is funding will one day run out. Both he and his soon-to-be wife are hopeful for a cure in Madison's lifetime.

To keep up with the family’s story, go to their Facebook page, Madison's Miracle Miles.

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