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Make room for Rory: Baby with condition requiring therapy, surgery finds support and love in big, happy family

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buy this photo Herald & Review/Lisa Morrison<br> Rory McKinney works with this toy learning to pick up, push, match colors and other skills with his therapist Kim Bender. Working with the balls is one of his favorite games with the therapist.

HARRISTOWN - Outside on the McKinney Farm in Harristown, the goats are bleating and dogs are barking, while inside, children are running around laughing.

Even the newest addition to the family, 17-month old Rory Tait, is joining the buzz of daily activity at the family home.

Rory, who was born with a condition called radioulnar club hand (one arm is shorter than the other because of the absence of an elbow) with syndactyly (webbed fingers on his right hand), is developing into an active toddler.

"He is so much different now. Before, his arm was locked behind his back and he couldn't move his little head from side to side," said Rory's adoptive mother, Ann McKinney. "We have seen tremendous improvement because of the therapy that has loosened up his neck and shoulder muscles."

McKinney said she remembers taking Rory to Shriner's Hospital in St. Louis and specialists in Indianapolis and Springfield, looking for some kind of medical miracle to help him. But they offered little hope, she said.

"Everyone kept saying the same thing, that they could separate the fingers and break the longer arm and fuse it into a permanent position, so that he could reach and feed himself," which McKinney and her husband, Dale, didn't see as an option for their adopted son.

"I happened to be watching a news program on the Fox channel and this story about a doctor named Dror Paley at Sinai Hospital in Baltimore, Md., who had performed a surgery to lengthen the legs of a young man in Mexico and built him a knee. He was apparently born without a knee joint. He is now the No. 1 swimmer in Mexico and will be on the Olympic team," Dale McKinney said.

"Anyway, I Googled information on Dr. Paley and then e-mailed him. He personally e-mailed us back within six minutes and told us to send him information on Rory's case and if we could bring him to Baltimore."

Paley is director of the Rubin Institute for Advanced Orthopedics at the hospital.

Based on Paley's diagnoses and numerous CAT scans, Rory had no bicep muscle and an immature elbow joint.

Paley told the McKinneys that he could perform a surgical procedure by taking the brachialis muscle in the arm to act as the bicep muscle or transplant a muscle from the calf of the leg to the arm that would act as a bicep muscle. He also would separate the fingers on the webbed hand.

Now the McKinneys are seeing brighter days ahead for Rory once he has several reconstructive surgeries.

The problem is the astronomical cost of taking him back and forth to Baltimore. The first surgery is scheduled at the end of October, and Dale McKinney's insurance company will only cover 40 percent of the operation.

Relatives and friends of the McKinneys decided to have a benefit and silent auction to help cover the cost for the three surgeries Rory will need.

One big family

Dale and Ann McKinney love kids and have adopted four over the years in addition to their two biological children.

Rory came into their lives last year, when they traveled to Champaign to meet his birth mother, who was pregnant with twin boys. She was planning to give up both boys for adoption.

When the twins were born April 17, 2006, Rory's brother had no physical disabilities. The birth mother asked a judge to allow her more time to decide on giving up the twins; she was granted 30 days to make up her mind.

Meanwhile, the McKinneys took both babies home and named the boys Ronan and Rory.

After three weeks, the birth mother called the McKinneys to say she was going to keep Ronan and would sign papers of parental surrender for them to legally adopt Rory.

The couple has helped Rory through his disabilities and have seen the small improvements he has made each day. By the time Rory was 9 months old, he was able to hold a spoon with the two small fingers on the left hand and feed himself.

Kim Bender, an independent occupational therapist, comes out to the farm every Wednesday to work with Rory.

Recently, she showed Rory how to pick up some purple, blue, green and yellow balls, place them on a circular toy tray and push them down inside some holes.

Rory immediately got into doing the exercise.

"We're just seeing what he can do and his cognitive skills," Bender said. "For his age, he is functioning at a 7 percent delay from the normal developmental curve. But he continues to meet every milestone we have set before him."

Bender scatters some pinto beans on the floor for Rory to pick up, which is a little more difficult task. He is able to bend over and scoop up the beans with his two fingers and place them inside a bottle.

It has only been recently that Rory became aware that he could coordinate both arms to hold items, Bender said, adding that it has been amazing to watch his skills develop.

Unlike most babies who crawl around on the floor and can easily stand using their arms to push themselves up, Rory can't stand up by himself and has to use his body to push up against something to stand without help.

He usually enjoys playing with all the toys the therapist brings. On this day, he stacked some blocks and smiles.

"Yeah, we think you're hip, dude," Dale McKinney said, praising his son during the session. Rory's other siblings clap and cheer him on.

"When he becomes a teenager, we want to tell him that we did everything we could for him to become a functioning adult," McKinney said.

Sheila Smith can be reached at sheilas@herald-review.com or 421-7963.

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