Garden Plain residents band together to support family in quest for transplant

04/22/2013 12:04 AM

08/06/2014 1:07 AM

The call could come tomorrow.

Or next week. Or next year.

Christopher Simon has to stay within an hour of the hospital in St. Louis just in case the call is made telling him to come for the double lung and liver transplant he needs to extend his life.

“It’s kind of a waiting game,” said Ron Simon, Chris’ father. “We’re just waiting for the call.”

Simon, 25, has cystic fibrosis. His mother, Sarah, quit her job to be with him in St. Louis.

But they’re very much in the hearts and on the minds of the people back in their hometown of Garden Plain.

While the Simon family has insurance through Ron’s job, a fundraising breakfast next weekend and other special events are intended to help pay what insurance won’t cover plus the cost of Chris and Sarah living in St. Louis.

“We all stick together and help each other out,” said Carolyn Stuhlsatz, who has helped organize events to assist the Simon family. “They’re wonderful people – pleasant, friendly and humble. We just want to help them out in their time of need.”

When others around the west Sedgwick County town have hit upon hard times, Joan Scheer said, the Simons have so often been the ones leading the effort to lend a hand.

“In turn, this is something we can do for them,” Scheer said.

Two of the Simons’ three children were born with cystic fibrosis. Their daughter, Emily, died in June 2009. Their youngest son was not born with the disease and is at home with his father in Garden Plain.

Farmers in the area banded together to harvest the Simons’ wheat after Emily died. As meaningful as that gesture was, Sarah Simon said, what residents and relatives have done for them in recent weeks is “amazing.”

“You don’t realize how many friends you have until something like this happens,” she said. “Words can’t explain it.”

The Simons could be waiting a while. According to the United Network for Organ Sharing, only 55 double lung-liver transplants have ever been done in the United States – all of them since 1994. Typically, only a handful of such transplants occur in a year.

A benefit bingo earlier this month raised some money for the family, and the Simons have been regularly receiving gift certificates of various kinds in the mail.

Business owners and residents have donated prizes for a raffle intended to raise money for the family.

“This just goes on and on,” Sarah Simon said. “Every day you get the mail, you don’t know what you’re going to get.”

One person asked what Chris’ favorite restaurants were and then sent a gift certificate matching his request.

“She wanted to make him happy,” Sarah said.

When the benefit bingo was held earlier this month, Ron Simon called his son and held his cellphone to a microphone.

“Cold chills go down your arm, just hearing his voice and hearing how appreciative he is,” Scheer said.

People who won bingo jackpots turned around and donated the money to Chris.

“That’s the kind of people you have here,” Scheer said.

Ron Simon said Garden Plain’s support has left him almost speechless.

“I don’t think I could live any other place than I do,” he said. “The community is so supportive.

“Other communities might be that way – I’m sure they are – but this one, people just go beyond what they need to do.”

Emily Simon didn’t want a transplant until just a couple of months before she died, Sarah Simon said. By then, it was too late.

“If we forced her and something happened, we wouldn’t have lived with ourselves,” Sarah said. “But going through this with him (Chris) ... she had so much spunk. She probably could have made it if she had spoken up sooner.”

Sarah Simon hopes to come home to Garden Plain for the breakfast, but Chris has to stay in St. Louis. Should the call come while she is gone, he can drive himself to the hospital.

Transplants are delayed as long as possible, she said, because recipients of such a transplant have typically lived no more than five years due to complications related to organ rejections.

“I know the success rate isn’t good, but I’ve got to keep my faith up,” Sarah said. “We’ve got to put it in his (God’s) hands.”

Last week, they met a man who received his double lung-liver transplant in 2007.

“He asked, ‘Can I pray for your son?’ ” Sarah said. “I’m not going to turn anybody down.”

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