Charlotte fundraiser Nov. 2 to aid rare heart disorder
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Friday, Oct. 25, 2013

Charlotte fundraiser Nov. 2 to aid rare heart disorder

  • http://media.charlotteobserver.com/smedia/2013/10/24/12/35/IArAF.Em.138.jpeg|262
    - COURTESY OF DAN POVENMIRE
  • http://media.charlotteobserver.com/smedia/2013/10/24/12/35/OuC0B.Em.138.jpeg|178
    - COURTESY OF JOE KIRK
    Tiana Povenmire-Kirk’s siblings, sister Linda McWhorter and brother Dan Povenmire, the co-creator of Disney’s “Phineas and Ferb,” are supporting her a fundraiser for her son’s hypoplastic left heart syndrome.
  • Want to go? Tickets for the Nov. 2 fundraiser, sponsored by Kappa Delta Sorority, are available at https://phineas-and-ferb-family-fundraiser.eventbrite.com. The event will take place at 11 a.m. at McKnight Hall in the Cone Center at UNC Charlotte. Parking is free, located off NC 49 at 9201 University City Boulevard. Attendees have an opportunity to purchase (for an additional donation) T-shirts bearing original artwork by Dan Povenmire, designed specifically for this event. To order online: https://team-sullivan-t-shirt.eventbrite.com

Dan Povenmire, co-creator of the popular Disney animated series “Phineas and Ferb” – and the voice of the cartoon’s Dr. Heinz Doofenshmirtz – will be in Charlotte the first weekend in November to talk about the show, showcase his artistic and musical skills (he also writes the music for the show) and sign autographs.

His trip to Charlotte is not part of a promotional junket, however.

Povenmire is coming to support his sister, Tiana Povenmire-Kirk, who lives in Monroe and is a special education research faculty member at UNC Charlotte.

He is also coming to support his nephew, Sullivan Daniel Kirk, who will be born in December and will need three surgeries before he is 3 years old.

His appearance is part of an event planned to raise money for Sullivan’s medical expenses. After that, proceeds will benefit the Levine Children’s Hospital, The Heartest Yard (the foundation started by Carolina Panther Greg Olsen, whose son was born with this same rare condition) and Camp LUCK, a medically supervised residential summer camp for children with heart problems.

Sullivan was diagnosed with hypoplastic left heart syndrome (HLHS), a complex congenital heart defect, at his first ultrasound.

“I knew something wasn’t right,” Povenmire-Kirk, 39, said. “I wasn’t seeing all four chambers of his heart.”

Sullivan’s first surgery will be performed a few days after his birth. He’ll face another operation when he is 6 months old, then another when he turns 3.

The diagnosis “came completely from left field,” Povenmire-Kirk said. “We had no family history of heart disease.”

Sullivan’s siblings, Sam, 17, Jacquilynne, 7, Skylar, 5, and Benjamin, 21/2, are all healthy, as is their father, Joe Kirk, 46. Most children born with HLHS have no genetic component or predisposition for the disease, so part of Povenmire-Kirk’s mission with the fundraiser is to raise awareness about HLHS.

“It wasn’t until the early 1980s that anyone was able to get these babies to live longer than a few days,” said Povenmire-Kirk.

The good news is that surgeries and medical interventions have made great strides, but the costs are staggering.

“Even with good insurance,” Povenmire-Kirk said, “our out-of-pocket expenses are huge.” And many services that Sullivan will need, like physical therapy and careful monitoring of his oxygen levels, are not covered by insurance.

Povenmire-Kirk credits her sister, Linda McWhorter, with coming up with the idea for the fundraiser, one of a series McWhorter is spearheading. And her brother, whom Povenmire-Kirk called the day she got the devastating news, was happy to be able to contribute.

“It’s great that I’m now in a position, because of the popularity of the show, to help in ways that I couldn’t before,” he said. He told both his sisters to consider him their “fundraising monkey” and to put him to full use for the cause.

The local fundraiser, geared to young fans of the show and costing $10 per ticket, is scheduled for 11 a.m. Nov. 2 in UNCC’s McKnight Hall. Povenmire will draw his popular characters on stage as he talks about the show, and Radio Disney DJs will provide musical entertainment.

Additional prizes and incentives for making donations include autographed “Phineas and Ferb” posters, personalized character sketches, baskets of Disney merchandise, event T-shirts with original artwork by Povenmire and the opportunity to have Povenmire record a message on your phone in the voice of Dr. Doofenshmirtz.

“The diagnosis was really overwhelming,” Povenmire-Kirk said, “but the support we’ve received and the way people have rallied around us has been equally overwhelming.”

Katya Lezin is a freelance writer. Do you have a story idea for Katya? Email her at bowserwoof@mindspring.com.

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