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Girl finds support to understand missing hand

by MEG JONES Milwaukee Journal Sentinel on September 10, 2013 11:00 AM

NEW BERLIN, Wis. — Bella Zizzo looked curiously at the black-leather-clad man’s hook as she accepted a commemorative coin from the American hero.

Normally a chatterbox, Bella, 4, was uncharacteristically shy around Medal of Honor recipient Gary Wetzel, who had driven his 2006 Harley-Davidson Ultra Classic from Oak Creek to meet the little girl at her family’s home in New Berlin.

The bearded Vietnam veteran and the tiny blond girl, whose favorite color is pink, are kindred spirits in a way. Bella Zizzo was born without a left hand; Wetzel lost his left arm in combat.

Bella’s parents brought her up to figure things out for herself. Without anyone telling her, she found a way to pull on her socks, feed and dress herself and fix her hair. For Wetzel’s visit, she picked out a pink flowery dress, pink flip-flops and a hair pin adorned with a tiny pink and yellow flower.

A few months ago, Bella began noticing people staring and treating her differently and for the first time she tried to hide her left arm. And when she asked her mother if she could hold some seeds to grow fingers like the wild flowers blooming in the front yard, Sarah Zizzo and her husband, Ryan, decided to raise money to take her to Camp No Limits in Florida in January, where she could meet other children with similar challenges.

Wetzel was touched by the little girl and her family’s quest to raise money to take Bella to a place where she can meet other kids with missing limbs.

“If we can do anything to help this girl, we will,” said Wetzel, who has gotten used to people staring at his prosthesis. “Kids are honest. I tell them it was a big explosion and I let them touch the hook, and they move on.”

Wetzel designed his prosthetic arm so he could pull and push the clutch on his Harley. Bella Zizzo has Harley enthusiasts on both sides of her family; her mother’s father lost a leg when he was struck on his Harley by a vehicle that failed to stop, and he continued to ride a Harley trike with his prosthesis.

Wetzel plans to organize a poker run fundraiser among members of his motorcycle club this fall, and House of Harley in Milwaukee has pledged its support after the 110th anniversary festivities. The goal is to raise $5,000 for the family of five to travel to Florida for Camp No Limits. Through bake sales and other events, they quickly raised $1,500.

Sarah and Ryan Zizzo were at the 20-week ultrasound for their firstborn when the technician told them they were having a girl and almost immediately said the baby didn’t have a left hand.

The couple went through a flood of emotions, ranging from happiness at becoming parents of a daughter to fear for their baby.

Ryan Zizzo asked if, with four months to go before her birth, their baby could still grow a hand.

Sarah Zizzo, a pediatric nurse at Children’s Hospital of Wisconsin, knew if their daughter was to have a left hand, she would have it by 20 weeks. When Bella was born, they vowed to treat her no differently, deciding she was perfect the way she is. They let her find her own way and so far, Bella has managed sippy cups, zippers, combs and buttons.

“There are definitely times when I want to say, ‘Let me do it.’ She’s not necessarily struggling, but she’s trying to figure out how to make something happen. She’ll say, ‘I’ve got it Mom,’” said Sarah Zizzo. “She’s very stubborn.”

After meeting Wetzel this week, Bella went inside her home and while her 2-year-old brother Grayson and 6-month-old brother Luca slept, she played a game on her mom’s iPhone and snapped pictures, deftly using her left arm to hold the phone and her right-hand fingers to push the buttons.

The couple had not considered a prosthetic until recently.

Doctors at first told them when Bella was born they would have to amputate more of her arm for her to use a prosthetic, something the Zizzos were unwilling to do. But with Bella now more aware that people are noticing her arm is different, they recently visited a prosthetic business in Milwaukee with mixed emotions.

They discovered cosmetic and passive arm prostheses that are controlled with shoulder movements as well as expensive myoelectric hands powered by forearm muscles. They’re not sure what to do about prostheses partly because of the high cost of myoelectric hands and partly because they wonder what happens if she becomes dependent on a prosthetic hand and the device breaks.

That’s the main reason why they want to take Bella to Camp No Limits.

Whatever their decision, the Zizzos often feel like they’re going it alone. When Sarah Zizzo learned her baby’s left hand had not formed, she wanted to call someone and ask advice but found there’s no support group or community in Wisconsin for parents of children like Bella.

Sarah Zizzo started a blog to find others in the area and to raise awareness of what’s a fairly common defect. Through the blog, Wetzel and his wife, Kathy, discovered the family’s quest to take Bella to the camp.

“We’re trying to take her there so she can see there are other kids like her,” Sarah Zizzo said.

Online: Sarah Zizzo’s blog: bellacampfund.blogspot.com

PHOTO: In this Aug. 21, 2013 photo, Sarah Zizzo and daughter Bella Zizzo, 4, visit with Medal of Honor recipient Gary Wetzel, of South Milwaukee, in New Berlin, Wis. Bella was born without a left hand and her mother is trying to raise funds for the family to travel to Florida to a camp for kids with missing limbs and has been befriended by Wetzel, who lost his left arm in combat in Vietnam. (AP Photo/Milwaukee Journal-Sentinel, Michael Sears)

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