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Lizzie2

New Legs, New Life

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Hi

I thought I'd share this news article about little Robby, that I've just been sent:

Boy must lose his feet so he may walk

He was born without fibulas, but there's no stopping this toddler

By Elizabeth Neff

The Salt Lake Tribune

As her 11-month-old son starts to fidget in her lap, Alicia Aiken calms him - gently stroking his hair and running her hands down his legs.

Caressing his tiny, wiggling toes, the young mother treasures them - now more than ever. In a few weeks' time, Robby will have both feet amputated. Robby was born without fibulas in both legs; his feet are positioned just below his knee, and turn outward.

"The choice was made for us," Aiken said. "When he was born, it was obvious it was so severe that we didn't have an option." Aiken and her husband weren't sure their son would be able to walk. Yet at 7 months of age, the determined child pulled himself up and began standing. Now he crawls, and cruises with the aid of a stool in the kitchen of the family's Salt Lake County home. "I think once he puts [prosthetics] on, it will be pretty easy for him to walk in them."

Stephen Santora, a pediatric orthopedic surgeon for 25 years, will perform Robby's surgery in November at Shriners Hospital in Salt Lake City. Since 1925, the hospital has provided free treatment for close to 30,000 children from Utah and the surrounding Western states with problems or disorders of the bones, muscles, or joints. Santora helped the Aikens make the difficult decision to amputate Robby's feet. "What we try and do is get the kids most functional," Santora said. "Every study . . . has shown kids function better with the amputation."

Aiken, an ultrasound technician since 1996, is known for opening Fetal Fotos, Utah's first business offering photos of children in the womb. Before that, while working in a physician's office, Aiken saw children with physical disabilities and spoke with frightened moms. But Robby changed everything. "Before, I would feel bad, but I didn't realize how devastating it is," she said. ". . . I just didn't have the same compassion level."

At first, she was protective of her son, nervous about friends seeing her newborn's feet. "I wanted people to treat him like a normal boy," she said. "But then I just decided I can't control what people think. His feet are beautiful . . . unfortunately, they just don't work for walking."

A sculptor soon will make a cast of Robby's feet so his mother can remember them. Aiken said she plans to cremate the feet and keep the ashes. She has also put Fetal Fotos up for sale, to focus her energy on her son and a new project - a children's photography studio. She plans to offer free professional photography for children with disabilities. "I just want people to know just because something looks different, it shouldn't make a difference," she said.

When Aiken began sharing the news about Robby's feet, many people told her they knew someone with a similar disability. She shrugged many off, knowing how rare his situation was. But a California woman, whose cousin in Sandy knew Aiken's mother-in-law, immediately wanted to meet Robby. He would be the first person 51-year-old Catherine Hodge Smith had ever met that shared her condition.

Visiting with the Aiken family this year, Smith reassured them she's had "a good, full life," going to college, marrying, having a son, working as an airline gate agent and launching a career in interior and product design. "To be honest with you, I knew I was being called by God to pray with them," she said. "I have had all sorts of struggles, but you get through it. If he will learn to master things, he will end up being a leader. He's going to do something extraordinary."

Smith grew up with two brothers and a single mother who was fighting cancer. She underwent the first of many painful surgeries at age 4 and recalls a difficult 1 1/2 mile walk to school with braces on her legs. Her mother died just before she turned 15, the year Smith says she "fortunately" became an amputee. "I got artificial legs and there was no stopping me," she said. "My natural personality was an extrovert . . . I didn't enjoy being put in the back of the class just because I was the only one with a disability in the school growing up."

She encouraged Robby's family to pursue amputation, and is happy he will not share the stigma she felt as a child. "I knew as a little girl I would have just preferred to have the amputation," she said.   

Until his surgery, Aiken will keep a close watch on her son, keeping him and his 4-year-old brother home and healthy. Robby is expected to be using his new prosthetics as soon as six weeks after the surgery, she said.

"I think some day," said Aiken, "people will know him and not really know, unless he chooses to tell them, that he has prosthetics."

What is fibular hemimelia?

   

A congenital condition in which the fibula, one of the lower leg bones, does not develop in part or in whole. The condition results in varying levels of ankle and foot deformities. The odds of having it in one leg are about one in 5,000. In both, one in 10,000.

Taken from this link: www.sltrib.com/ci_3151864

Lizzie

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New Legs, New Life

1-year-old Robby gets prosthetic limbs after his feet are amputated

By Elizabeth Neff

The Salt Lake Tribune

Tyson and Alicia Aiken sit by a window, making nervous small talk, paging through magazines and occasionally sharing a reassuring smile to pass the time. Their 1-year-old son, Robby, is undergoing the amputation of his feet at Shriners Hospital in Salt Lake.

Born without fibulas and only a portion of his tibias - due to a rare congenital condition - Robby's tiny, twisted feet are positioned just below his knees. Surgeons say amputation is the best option for him to enjoy a normal quality of life.

The Aikens try to imagine their son walking and running, perhaps even becoming an athlete, with the help of prosthetic legs. The determined little boy already has learned to stand with the aid of a kitchen stool in his home.

"He's a special, special little soul," says his maternal grandmother, Kaye Skola. "God has given Robby a personality that is one that will be able to take on the challenge. You can tell nothing is going to stop him from doing what he wants to do."

During the previous few months, Alicia has done her best to keep Robby healthy for the operation. On Nov. 21, the family gets a phone call - pediatric Related

orthopedic surgeon Stephen Santora has an opening and can operate the next day.

Alicia has been preparing for this day since before her son was born. After years of working as an ultrasound technician, she recognized right away something was wrong with Robby's lower legs once she saw the images of her own ultrasound.

At Shriners Hospital, her mother lends moral support. Skola and Alicia have shared an even closer bond since Robby's birth.

"I'm really proud of her as a mother in dealing with the adversity of the situation, and doing it with a lot of grace," Skola says. "Once Robby gets through this, it will be positive. His life will change for the better, but it's hard to think that prior to seeing it."

After four hours of surgery, Santora and his team meet with Robby's family. He tells them Robby's left leg was the most difficult he has ever had to operate on.

"The left one was a good 30 to 40 minutes longer because of the amount of deformity around his heel area," he says. "The tendons were so tight, they had pulled his heel bones halfway up the back of his tibia." But the surgery went well.

Overwhelmed, Alicia lets go - collapsing in tears of joy, while Tyson makes a phone call to Robby's 4-year-old brother, Brody.

The unconcerned big brother is more interested in telling his father about the ducks he just saw. But months earlier, Brody was having nightmares about the upcoming operation. A tour of the hospital helped him understand what would happen.

Robby is hungry when he wakes with two brightly colored wrappings where his feet had been. His parents kiss his forehead, give him a bottle and tell him how proud they are.

After one day in the hospital, Robby is sent home in time for Thanksgiving. Once there, he crawls right away. As his swelling goes down, Robby fiddles with his wrappings, attempting to take them off.

"When he came home from the hospital, he kept undoing his bandages," Tyson says. "The first day back with his bandage off, he grabbed his leg and really looked at it."

Two weeks after Robby's surgery, his father takes him back to Shriners to get measured for new legs. His parents have noticed Robby has a new fascination with socks, wanting to carry them everywhere.

Legs at last: Robby's big day comes Dec. 16, when he and his family head back to Shriners to meet prosthetist Peter Springs - and get Robby's new legs, with their tiny feet and toes.

The artificial legs will attach to liners, or tight-fitting blue sleeves, pulled onto Robby's own legs, which are healing well. Alicia acknowledges she hasn't been rigorous about making Robby practice wearing them, and when she pulls the liners out of her bag, Robby spots them and starts to cry.

Springs rolls the liners onto Robby's legs while his parents wave an unsharpened pencil to distract him. After briefly sliding the new legs on Robby, Springs takes them to a shop down the hall to drill holes for a buckle.

Back again, Springs puts the liners on. Robby cries, but watches closely as Springs fishes the liner strap through a hole in the prosthesis and buckles it into place. "OK, let's have him stand up," Springs says.

Tyson puts Robby on the ground to let him crawl first. Robby seems a little uncertain, the legs cumbersome.

Time for fun. Tyson takes off the legs to show them to Robby, who draws one of them straight to his mouth, then peers inside. Tyson makes Robby laugh by making a bugling noise into the leg and then letting Robby do it.

Springs then takes the legs back for more finishing touches.

"Man, this is a lot of stress," Alicia says, worrying that Robby will be uncomfortable in the new legs.

But after the liners and legs go on for a third time, Robby immediately reaches for his new toes and hangs on, appearing content.

Tyson takes him to a play area, sitting on the floor and supporting Robby at a table that has Legos inside. Robby eventually crawls away to another table. He pulls himself up to his knees but doesn't try to stand.

Tyson lifts him up to his feet to show him how - and it happens.

"Look!" Tyson says. "Robby is putting weight on his left foot!"

Alicia replies, "Oh my gosh, I saw him!"

Tyson takes Robby over to another play table. This time, after Tyson props Robby on his feet, Robby stands alone, holding on.

It's a moment of awe for Alicia. "Oh my word," she says softly. "I can't believe it."

Springs is sure Robby will be standing on his own within the next two weeks, as his quadriceps strengthen enough to fully bear his weight. Wiping away tears, Alicia says she knows her son will be walking soon.

"He has had such determination from the time he was born. He's amazing to me."

Article (with pics) taken from this page of the Salt Lake Tribune website.

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WOW!!!!!

It was watching an hour of TV about the children at St. Judes Hospitat a month after my amputation, that gave me the spirit that has carried me through.

Aren't children amazing?????

Thank you for such a beautiful story.

Now, if Robby, (and his loved ones), can do it .............

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Thank You Afet for posting that story. :) I have been feeling a little cheated in life today and seeing that has helped me to realize just how blessed I am. Robby is certainly an inspiration.

Diane

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Thanks, Afet, for that wonderful story and pictures. Where DO you find all this stuff?

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Thanks Afet. Fantastic story. Helps get me off my duff and get busy.

Carol

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Lovely story. Thanks so much Afet.

There are some really brave people out there.

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My apologies Lizzie. I don't actually recall reading it... though it was days before I moved, so that may explain it. :blink:

In any case, I have merged these two topics now. ;)

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Thank you for sharing Robbie's story with us. It's a real eye-opener for me. Children are a blessing to our world, epecially when they teach you something like that helpes me to realize just how blessed I am.

Patti

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This is what I get for not checking in here more often....this little boy lives in MY city! I could have sent a nice, encouraging card to his family in November...bummer! I will send one today, just saying "hang in there'......thanks for finding this story, guys....I dont get the salt lake paper anymore so I missed it.

Judy

Utah

LBK

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;) ;) Thanks gals. that was a great story...I just got to read it...I think that was when I was having my 1st. heart attack.

Those of you that have been amputees since childhood...do you think it was easier than someone who becomes an amputee later in life??

;) B) <_< EAG(ann)

PS: We have another ann on here....where are you from?? I know I am the 2nd...

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Those of you that have been amputees since childhood...do you think it was easier than someone who becomes an amputee later in life??

As I had my first amp when I was 18 months old, I can't really compare...but, going from what I've experienced over the years and my observations of 'adult amps', I wouldn't say it's easier (as losing a limb is never easy)...it's different.

Lizzie :)

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loosing a limb i childhood means, that u never had the chance to grow up with all limbs.

i don`t want to miss my complete time.

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I can understand that, Thomas.

There are positives and negatives to anything in life.

The vast majority of the time I am very content with my life...only very, very occasionally do I wonder what life would have been like with two complete legs. After all, I wouldn't be the same person would I? :)

Lizzie :)

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