Wednesday, May 27, 2009

Girl's memory lives on through funding effort

ASHTON-Most 3-year-olds look forward to the joy of opening presents, eating cake and playing with friends and family members on their fourth birthday.

Not Autumn Huss.

Rather, the daughter of Troy and Becky Huss of Ashton spent her fourth birthday recovering form open heart surgery.

When Becky was five months pregnant with Autumn, she went in for a routine ultrasound. Only, what doctors at Orange City Area Health System discovered would leave the Husses in disbelief.

The medical professionals in Orange City knew something was wrong, so they sent Becky to Sanford Health in Sioux Falls, SD, where it was determined Autumn had an irregular heartbeat.

On April 15, 2005 — five days after she was born at the University of Michigan Health System in Ann Arbor, Autumn underwent open heart surgery to repair a hole in her heart; correct her aorta and pulmonary arteries, which had been reversed; and fix her aortic arch, which was becoming too narrow.

“If they would not have determined something was wrong with Autumn’s heart before she was born, she would not have made it,” Troy said.

The Husses thought their problems were behind them until they were getting ready to be discharged and one more complication was found.

“They found that one of her coronary arteries was kinked, so she went back in for surgery two weeks from her birth date,” Becky said.

Autumn has been going back to Sanford Health for six-month checkups since she was born. She also has to have a MRI once a year.

In January, when she went in for her regular checkup, doctors found that the blood pressure between Autumn’s arms and legs was severely different, so she was again sent to the University of Michigan Health System.

“They thought they would be able to just do a heart cath and go in and balloon her heart open,” Becky said.

But, the procedure proved unsuccessful, so on April 9 — the day before Autumn’s fourth birthday — she underwent her third open heart surgery.

While Autumn was recovering at home, Troy and Becky received a unexpected phone call.

Shayla Rohrbaugh was born Dec. 4, 1998, with a condition called schizencephaly, meaning the two halves of her brain did not connect while it was developing.

After she was born, Shayla could not feed from a bottle and began having seizures, so her mother, Lindsay, took her to the doctor.

“She was only supposed to live for a couple of years,” said Jerry Faulkner of Spencer, Lindsay’s father.

But, Shayla, who Faulkner called Shayla Bee, defied the odds and lived to be 6.

Not long after Shayla died, Faulkner formed a living memorial to his granddaughter, the Shayla Bee Fund.

And in the past two years, the group has raised more than $35,000 that has been distributed to responsible working class families in limited financial means with a child in a medical crisis.

“We’re learning as we go, because we had no idea what we were getting ourselves into,” Faulkner said.

He said all of the money collected has been through event-based fundraisers — be that canoe floats, motorcycle shows or dodgeball tournaments — all throughout northwest Iowa.

Monetary donations as high as $2,000 are given to families in need, but to even be considered, the family has to be nominated by someone. The Shayla Bee Fund Board meets once a month to review the applications. If the board sees one that fits the mission statement, interviews with the family are conducted and funds are awarded unconditionally.

“The money is not for anything; it’s for whatever they see fit,” Faulkner said. “We just assume that our donation will be spent wisely by the family.”

When the organization first began, the Shayla Bee Fund only considered those families that lived within a 20-mile radius of Spencer, which is where the group is based.

“We probably did eight or nine donations in the area, but then we ran into a little trouble, where we went four months without a nomination when we had money in the bank, so we met and talked about the sustainability of what we were doing and ultimately made a decision to reach out farther,” Faulkner said. “We knew of several families that could have used our help, but they were outside of our geographical area.”

The decision to reach out to a 50-mile radius was finalized in November 2008. Since then, the requests have come pouring in.

And when Faulkner and his group of motorcycle-riding friends travel to the families’ houses to personally deliver the donation, he cannot help but think of Shayla.

“It’s something you’ll never forget — standing over a little girl and watching her die, but our family has chosen to make this a good thing because there’s nothing we could have done to change it,” he said. “We decided that this was going to strengthen our family, not destroy it, and with our friends, look what’s happened. Shayla has become a household name now.”

Troy and Becky Huss aren’t sure they would have ever heard of the Shayla Bee Fund if it wasn’t for Troy’s sister-in-law, Janine Huss, who works with Shayla’s mother, Lindsay.

Janine nominated Troy and Becky, and on April 21, they received a phone call from Jerry Faulkner, telling them they would be receiving a donation — making them the 17th family to have benefited from the Shayla Bee Fund.

“It was a big surprise,” Troy said. “We weren’t expecting it at all. We had all of Autumn’s medical bills coming in and our expenses from being in Michigan, plus all of our lodging and food.”

While Autumn seems to be doing fine now, Troy and Becky have been extremely impressed with the amount of support they have been showing throughout the past four years.

“We definitely want to thank the Shayla Bee Fund, of course, as well as the community, the Orange City Area Health System, Sanford Health, the University of Michigan, the Ronald McDonald House, Children’s Miracle Network, our families and my employer, Deluxe Feeds — they’ve all been very, very good to us throughout the whole thing,” Troy said.

This article appeared in the May 16, 2009 edition of The N'West Iowa REVIEW.

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