Wednesday, January 11, 2012

Auction benefits youngster facing lung transplant

Volunteers call 9-year-old an ‘exceptional child’

By DALE HEBERLIG
Managing Editor The Shippensburg News-Chronicle, Pennsylvania

Lori Fleagle says there’s a team of “Grace’s Angels” coordinating the Jan. 13 Grace Fleagle Benefit Auction – a fund-raiser to help the Greene Township family get through the double lung transplant ordeal faced by 9-year-old daughter Grace.

The auction – that features some high profile items like a 3-tear-old registered quarter horse and the pick of the litter from American bulldogs due this month – will be at Ye Olde Country Auction on Shepherd Road in Newville starting at 7 p.m.

Jill Kerstetter and Ginger Mortorff are “Grace’s Angels.”

Kerstetter says she first met Grace this summer and was entranced by the personality of the little girl who’s burdened by worsening effects of cystic fibrosis, a genetic illness that attacks the lungs and pancreas.

The two met at a horse show in which Grace’s sister Arielle was competing.

“A mutual friend introduced us,” Kerstetter says. “We spent the afternoon talking and laughing and getting to know each other. I knew instantly that Grace was a wonderful exceptional child.”

That’s a typical reaction to meeting the youngster, says her mother, Lori.

Although she’s seriously ill, Grace remains irrepressible.

“She’s a wild little woman,” says Lori of her daughter. “She’s full of life and very vivacious. She doesn’t take any of this laying down. When people meet her, they can’t help getting a laugh.”

Kerstetter and Mortorff did more than marvel and laugh.

“With the conditions of Grace’s disease, she and her family endure many obstacles and challenges that a typical family does not,” Kerstetter says. “Even with Grace’s family health insurance, facing the financial responsibility of paying for transplant is quite a burden.”

The Jan. 13 auction is aimed at helping with costs like travel and lodging expenses and household and food expense during an 8-week stay in Pittsburgh when transplant surgery is done.

Lori says her daughter’s health has declined dramatically since autumn, resulting in 24/7 oxygen use and lengthy IV injection treatments that last weeks a time.

While Grace has a passion for horses, other pets and outdoor activity, she is now homebound in an effort to preserve her health until a transplant match if available. She now occupies her days with coloring, drawing and making crafts.

Kerstetter says the youngster still continues to amaze.

“She is appreciates every day and shares that joy with others in her life in so many ways,” Kerstetter says.

Unable to attend public school any longer because of her weakness and risk of infections, Grace is being homeschooled, her mother says. They wait with optimism for news of a transplant that could “come today or in six months or nine months.”

Lori Fleagle says doctors think Grace will be able survive the wait with the right care, and say a breathing machine is a last resort that remains available.

When a match is found, Grace will receive a double lung transplant that her mother says “will buy us five years or more, maybe 15 or 20” before the ravages of rejection take a toll. A second transplant is always a possibility, Lori says.

“We have to go, we can’t just sit and pity ourselves,” she says. “I’m her advocate.”

Even so, Lori Fleagle says the work of Kerstetter and Mortorff on the upcoming auction has provided a fresh shot of motivation.

“I can’t tell you how much this auction has restored by faith in God and in people,” she says. “I can’t think of words that express my thanks to Jill and Ginger. They work at this 24/7. We call them “Grace’s Angels.”


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