Keepers advocates CHD Awareness Week

MADISON – Sixteen-year-old Erin Keepers has a favorite quote … “Half a heart — twice the fight.”

Endorsing that quote requires extra courage for Erin. She was born with a Congenital Heart Defect (CHD) called Hypoplastic Left Heart Syndrome.

“This basically means Erin was born with half a heart,” her mother Cynthia Keepers said. “CHDs are the no. 1 birth defect that causes death in infants.”

In fact, CHDs kill more than twice as many children annually than all forms of childhood cancer combined. “Yet, childhood cancer research earns five times the amount of money of CHD research,” Cynthia said.

Erin hopes to change these statistics with a petition to nationally recognize Feb. 7-14 as CHD Awareness Week. To sign the petition, visit petitions.whitehouse.gov/petition/nationally-recognize-february-7-14-congenital-heart-defect-awareness-week-2.

Feb. 11 is the deadline for petition signing. Hopeful Hearts Foundation created the petition.

“Erin lives a normal life,” Cynthia said. She receives care from a pediatrician and cardiologist. “Some days are harder than others for exercise.”

Erin is a sophomore at James Clemens High School. She dances competitively with The Dance Company in Madison and writes online about her dance successes to encourage other CHD patients.

Kirk and Cynthia Keepers knew that Erin had this CHD before she was born. After she was born in Wilmington, Del., Erin required her first surgery at two days old at the DuPont Institute.

“We were pretty lucky,” Cynthia said. Without prenatal diagnosis, many babies die within the first 48 hours.

Erin recovered well from five surgeries but developed a serious staph infection after the third operation. “Doctors kept her in the hospital a long time,” Cynthia said.

A retired Army officer, Kirk Keepers works for AMCOM at Redstone Arsenal. The Keepers’ son Ryan, 13, attends Liberty Middle School and plays football and wrestles. He has no health problems.

Last October, Erin received her Make-A-Wish request. She visited for one day in Atlanta with Chloe Grace Moretz, star of the movie “The Fifth Wave.”

Hopeful Hearts Foundation supports individuals with any type of heart defect.

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