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A warrior with heart

Catoe's fighting spirit inspires others

Posted: August 26, 2011 4:27 p.m.
Updated: August 29, 2011 5:00 a.m.

Steve Catoe

Steve Catoe had half of a heart and no breath.


Yet there he was three years ago, standing in front of 33 Social Security Administration (SSA) officials and doctors, attempting to paint as vivid of a picture as he could to give the audience a glimpse into his life. 


The Bethune man knew all too well about the debilitating effects that congenital heart disease can have on people. Their conditions barely existed in the SSA review system, and he had grown tired of watching his fellow Adult Congenital Heart Association (ACHA) members fight for years to get their disability benefits.


So Catoe -- along with ACHA President Amy Verstappen, Dr. Karen Kuehl and ACHA Board Chair Barry Meil -- flew to Baltimore to speak during an SSA public hearing, armed with a binder full of letters from the organization’s members who described their own struggles to access disability benefits.


“He was our secret weapon, our go-to guy because he could just tell his story in ways that the rest of us can’t,” Paula Miller, ACHA membership services manager, would later say.

Three years later, the SSA finally made disability status automatic for those living with a single ventricle and Eisenmenger’s Syndrome. So on July 14, Verstappen brought Catoe to Washington, D.C., to witness the “momentous occasion” with her. 


A picture taken at the event shows Verstappen posing for a picture with an ACHA board member, a member of the organization’s “Half a Heart Club,” as well as SSA Commissioner Michael Astrue. 


In the middle was Catoe, but only in an 8-by-10-inch Lucite frame. His parents found him hunched over his computer in November 2010, having just posted another blog in his “all out, bare knuckle, unrestricted mortal combat” war on congenital heart defects. He was 44.


“There were seven congenital heart defects that were put into law as part of the compassionate act, so people automatically can get Social Security,” Miller said. “And it’s all because of Steve and his testimony.” 


Back in their Bethune home, Jo and Ken Catoe couldn't be prouder of their son, who they say was a tireless advocate for those who lived with congenital heart disease. 


And who better to fight for them than someone who knew exactly what they were going through.


Born in 1966 and immediately diagnosed with Tricuspid Atresia, Catoe survived a Glenn Shunt performed at Johns Hopkins University Hospital in 1967 -- making him the fifth survivor of the operation and the first to become physically active. 


He later would go on to graduate from Charleston Southern University, survive three heart surgeries and outlive a pacemaker.


“And he never complained,” his father said. Never, not even once.


“He never even said, ‘Why me?’” Ken said. “When he found out about the (ACHA), he jumped in -- and I mean he jumped in big time. He went all across the country making speeches for them.”


Miller said she has seen first-hand the level of enthusiasm that Catoe had for the heart association.


“He was invited to talk to parents … that was his heart and soul,” she said, adding that he also sold Olympics pins to raise money for the association and monitored the 7,000-member ACHA discussion forum. “He came to the office and helped volunteer by putting packets together. But if you ask me, he really should have also been a professional writer.”


When he wasn’t volunteering his time with ACHA, Catoe was constantly updating his blog, “Adventures of A Funky Heart.”


A Facebook memorial page for Catoe, which was set up only a day after he passed away and now has nearly 500 members, is full of Catoe’s friends from across the nation, thanking him for being a “warrior” for congenitive heart defects through his blog, online connections and speaking engagements. 


Some said Catoe helped inspire them to do more advocacy work. Others called him their hero.


Nearly all of them said they were blessed to have known him, even if it was only through his blog.


 “We really try to empower our patients to thrive. We want them to know that, ‘You can still do incredible things and change the world,’” Miller said. “You know, just like Steve did.”


 In a July 28 blog, Verstappen said the recent SSA occasion was noteworthy because, with the addition of 12 new cardiac diagnoses, there are now 100 conditions listed for compassionate allowance.


 “So Steve, thanks to you for helping to bring about this essential change, and we will keep working to make all the changes you envisioned come true,” she said.


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