By Jennifer Eisenbart
Editor
Sam Mielke had his first surgery when he was all of six weeks old.
Born with single ventricle transposition of arteries – leaving Sam with just one pumping chamber in his heart – Sam has been in and out of hospitals since he was born.
He had his next two surgeries at ages 1 and 3, and then further surgery when he became a teenager.
Through it all, he’s been as involved in the medical science as his parents, Kim and David.
“He’s always wanted to know everything his whole life,” explained Kim, who grew up in Burlington but now lives in the Waukesha area. “What’s going on with him, what’s coming next, what’s going to happen to him.
“The doctors couldn’t just talk to us. He had to be included,” Kim added. “He’s stronger than me and my husband put together.”
Sam Mielke is so strong that, in spite of missing months of high school, he graduated on time from Waukesha West High School and headed off for his freshman year at the University of Wisconsin–Whitewater.
And that strength will serve him well as the push for what might be Sam’s final surgery begins. Mielke is on the waiting list for a donor heart, and has been since February. He and his family – through the Children’s Organ Transplant Association (COTA) – are hoping to raise $100,000 to help fund the transplant.
Because of Sam’s ties to Burlington, Webley Chiropractic will hold a fundraiser for Sam on Oct. 12 from 8 a.m. to 2 p.m. Mielke’s grandparents, Bruce and Ruth, are patients at the center, and the Webleys have followed Sam’s story over the years.
“We want to help. It’s important, so important,” said Annie Webley, who has four children along with her husband, chiropractor Jim Webley.
“If we were in that same boat, we’d want people to step up and help us,” Jim said.
Who Sam is
While Sam has lived with his heart condition his entire life, it hasn’t stopped him from embracing life.
“You look at him, he looks like a normal, kind of skinny, small teenager,” said Ruth Mielke, Sam’s aunt.
Maybe the best way to describe how Sam has lived is the word his relatives use – “limited.” He can’t participate in sports, but loves them anyhow. He couldn’t always be in class at Waukesha West, but still graduated on time and with good grades.
“He’s a very brave boy,” Annie Webley explained.
His mother agreed.
“Sam … he just handles everything so strongly,” Kim said. “I’m very, very proud of him.”
And now, Sam is at Whitewater, with hopes of pursuing a degree in psychology.
“And he wants to be a psychologist,” said Kim. “Isn’t that amazing? He wants to help other people.”
Costs – and funding
With the cost of a transplant often exceeding $500,000, the financial burden can become immense on the family of a transplant recipient.
COTA is a national charity dedicated to organizing and guiding communities in raising funds for transplant-related expenses. The non-profit organization started originally by raising funds for one person, but now is helping 150 families. Money raised goes to the organization in general, which then pays it out to the families as needed.
“It gives people a little more comfort that people are looking over the accounts,” explained Ruth Mielke.
While fundraisers are going on all over, the Webleys will be adding something unique to the local one. During the Oct. 12 event, Webley will offer adjustment for $25 cash, while licensed massage therapist Tracie Biefeld will offer 10-minute chair massages for $10.
There will also be food and raffles – with prizes including gift certificates to several Burlington restaurants, spas, stores and theaters.
The Webleys didn’t think twice about pitching in – and Kim Mielke has seen that devotion from the Burlington community.
“The whole Burlington community … they’re better than what the Waukesha community has done for Sam,” Kim said. “It’s just unbelievable.
“It means an awful lot, is what it means.”
A need for organs
But for all of the help coming Sam’s way, there is one thing he and his family cannot control – the arrival of a donor heart.
While some tissue and organs can be given by live donors, most organ donations come from those who die and have decided to donate their bodies. An organ donor can choose to donate everything, can donate specific organs, or even just eye tissue (namely, corneas for transplant).
But for all the patients waiting for needed organs, not enough people have donated. Many check the donor box on their driver’s license, but it’s not enough. In order for it to be official, donors have to register on www.unos.org.
“There’s so many people out there waiting for organs, and they’re just not available,” said Kim Mielke. “It’s pretty depressing when you find out there’s so many kids who need organs, and there’s nothing there for them.”
For many reasons, people decide not to donate their organs when they die. Some see it as macabre, others just don’t bother.
The way Kim Mielke sees it, though, organ donation allows for a miracle.
“It’s a miracle, and people don’t see it as a miracle,” she said. “There’s other people who need things.”
To read more about Sam’s story or to donate, visit his page on the COTA website at www.cotaforsamm.com.
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