Even before Demi Reilly was born, her parents had been warned they wouldn't have the
10-fingers, 10-toes celebration at her delivery.

Instead, ultrasounds hinted at a deformity in her leg - one that baffled nearly a dozen
pediatricians and surgeons even after Demi arrived.

Her right foot was twisted and had only three toes. The small leg bone that's supposed to form
part of her ankle was missing. And her right leg was destined to be shorter than her left. The
doctors her parents consulted were almost universal in their recommendation: amputate.

Her parents balked. Instead, after nine months of networking and Googling, Demi's family has
traveled halfway around the world from Palm Beach, Australia, to Palm Beach County, Fla.

On Thursday, a surgeon at St. Mary's Medical Center will reconstruct the 15-month-old's foot
and leg as a dozen doctors from around the world watch in hopes of learning the technique Dr.
Dror Paley developed more than a decade ago.

"I couldn't imagine scheduling a hospital appointment, taking her there to remove her leg," said
Demi's father, Simon Reilly .

Reilly is a firefighter.

"In our profession you do everything possible to save a leg. Amputation is the last resort," Reilly

In his profession, they also pull together when one of their own needs help - even one they've
never met.

So when Reilly emailed Palm Beach County Fire Chief Steve Jerauld this year to explain the
family's plight, firefighters around the county responded like they would to a house on fire.

While the Paley Advanced Limb Lengthening Institute worked at St. Mary's to cover much of the
costs of Demi's surgery and follow-up therapy, the firefighters found a place for the family to
stay for free, and furnished it with a crib, high chair and the like.

They stocked it with groceries, down to the Weetabix cereal, Jerauld proudly reports.

Reilly can't help but gush with thanks. "It's a unique bond, the firefighter bond. These people
have gone beyond. They've done everything."

This "Paley chap," as Reilly calls him, gets a lot of credit too, he says.

Rare birth defect

Demi was born with what the Reillys now know as fibular hemimelia, a rare defect seen only once
in every 40,000 births - which explains why Demi's pediatrician had never seen it, and why, says
Paley, those doctors who have seen it still suggested to amputate.

"Not too many people do what I do," Paley said.

Surgeons around the world can lengthen a leg these days. But that's only half the problem with
this defect.

Demi's foot is also deformed.

While Demi can grab the stroller handles and toddle the room now, as she grows, the difference
in leg lengths will become more pronounced, making it more difficult and eventually possibly
painful to walk, according to her mother, Sandy Reilly.

Revolutionary procedure

For decades, attempts to fix both a shortened leg and a misshapen foot or ankle ended with the
foot deformity returning, rendering the patient unable to walk on it.

Studies into the early 1990s suggested patients were better off both emotionally and physically
when the limb was taken and a prosthetic leg used. One study, for example, concluded that
several failed attempts to salvage the foot leaves a patient at "high risk for emotional problems."

Additionally, prosthetics have so advanced, that even double amputees find themselves able to
walk, skip and jump.

But in 1996, after years of working on children with similar defects, Paley developed a strategy
to rebuild the foot that alters the bone structure in the foot and ankle, as well as reorganizes
the muscle and tendons around it.

Paley calls it the "superankle" procedure and says this reconstruction is successful more than 97
percent of the time.

At a presentation to his peers at this year's annual meeting of the American Academy of
Orthopaedic Surgeons in San Diego, Paley unveiled a study he hopes to publish indicating that
with this superankle, patients fare just as well as amputees both physically and emotionally.

Paley, who says he has performed more than 12,000 surgeries including about 100 superankles,
told them he'd conquered the problem of the returning misshapen foot.

"The superankle is one of the procedures that's made the outcome of the surgery better; it has
improved the limits of what can be salvaged," said Dr. Charles Price, chief of pediatric
orthopaedic education at Arnold Palmer Children's Hospital in Orlando.

And while Price has referred patients to Paley, he's not convinced the procedure is for everyone.

An amputation of the foot is quick and when done early can spare the patient a childhood of
multiple, expensive surgeries - surgeries that at times fail to meet expectations and end in
amputation anyway.

"A child with an amputation is not like an adult with an amputation. You give a child a
skateboard, they learn how to ride it; you give a 50-year-old a skateboard it's not the same."

Even the utmost authorities on limb lengthening and orthopaedic birth defects will in some cases
recommend amputation, Price said. The question is when is the foot and ankle too damaged to

More surgeries to come

Ideally Demi will have a working ankle joint, as well as begin to lengthen her tibia - the shin bone
in her right leg.

Paley will attach the bone to an outside brace that will encourage it to grow and straighten along
the way.

In the end, Demi will see about two more inches added to her right leg after this surgery. Those
inches will gain her time, but Demi will need at least one, if not two or three more surgeries
before she's an adult to help her right leg keep up with her left.

Those surgeries are less complicated and could possibly be done by other doctors in Australia,
Paley said.

"Because prosthetics are so good, you have double amputees below the knee who run
marathons," Paley said. "But you can't go to the beach and feel the sand underneath your toes."

And, say Sandy and Simon Reilly, their little girl from Palm Beach, Australia, would certainly want
to do that.

Direct link to this story
Limb Lengthening.us
Dror Paley, MD, FRCSC
You need Java to see this applet.
Toddler from Australia set for rare limb-saving
surgery in Palm Beach County
Demi Reilly, who has come from Australia to have her leg
lengthened at the Paley Advanced Limb Lengthening
Institute, is greeted by Palm Beach County Fire Rescue
Chief Steve Jerauld at St. Mary's Medical Center Monday.
Demi Reilly has come from Australia to have her leg
lengthened at the Paley Advanced Limb Lengthening
Institute at St. Mary's Medical Center Monday. Sitting are
(left to right) Palm Beach County Fire Rescue Executive
Secretary Laurie Chau, dad Simon Reilly, mom, Sandy
Reilly, and Palm Beach County Fire Rescue Chief Steve
Demi Reilly has come from
Australia to have her leg
lengthened at the Paley Advanced
Limb Lengthening Institute at St.
Mary's Medical Center Monday.
To read the update to this news story in The Palm Beach Post
Monday Sept 6, 2011
Click Here