A Fox Valley family is hoping their fight against heart disease helps lead to better laws in Wisconsin.
A bill was introduced this year that would require newborns to undergo a simple $4 test to detect congenital heart defects.
For most, they say the screening would lead to peace of mind.
For others, it could be life saving.
When Chris and Jennifer Van Asten were expecting their second child, they knew he would be born with heart disease.
An ultrasound at 20 weeks showed Pearce would be born with multiple congenital heart defects.
"Pearce was taken from us shortly after birth. At 10 days old he had his first surgery, had a shunt put in and at one year he had another procedure done and he just had his third surgery on May 2nd. It was the third of a series of three," said Pearce's mom, Jennifer Van Asten.
Playing at home with his two brothers, 5-year-old Pearce shows all the signs of a happy healthy boy.
But it's the visible scars on his body that show his real toughness.
According to the American Heart Association, 8 out of 1,000 babies are born with a congenital heart defect.
The Centers for Disease control says infants do not always show signs of it before going home.
But there is something called the Pulse Oximetry screenings for newborns.
It's a non-invasive test on the finger or toe within minutes of birth.
"And the idea behind it is to get that detection early enough so if there's any significant issues that the hospital staff and families are finding out prior to the families going home and having something emergent happen after that. Back to the ER... or air-lifted somewhere," said Pearce's dad, Chris Van Asten.
Raising awareness about heart disease is one reason the Van Asten's walk in the Fox Cities Heart Walk.
Another reason is to raise money.
For Pearce and kids just like him.
"Who knows... 20 years ago he may not have made it thru those first couple of weeks. So we're thankful everyday that people are willing to take part in different events to provide research so we're giving these physicians and researchers the tools they need to really figure out how do we make these kids have a fighting chance," said Chris.
Will Pearce have more surgeries?
"We hope not. We're hoping research helps doctors with new ideas. Because this won't last a lifetime for him. There might be a potential of a transplant down the road," said Jennifer.
For now, Pearce will play and he will walk and he hopes you join him.
The Fox Cities Heart Walk is Saturday September 14th, 2013 from 8:00 a.m. - 12:00 p.m. at Fox Valley Technical College.
The Pulse-Oximetry screening is currently mandated in several states.
A vote on the Wisconsin bill that was introduced by Senator Jerry Petrowski (R-Marathon) and Representative Joel Kleefisch (R-Oconomowoc) has not yet been scheduled.
To learn more about Pulse Oximetry Screening you can visit the American Heart Association's website.
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