Lilly Biagini: Attitude Determines Altitude

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By Betta Ferrendelli

While many six year olds are still deciding which letter comes next in the alphabet, Lilly Biagini was focused on something much more momentous: she made the decision to have bilateral transfemoral amputations.

 

Lilly, now a precocious, animated ten-year-old, was born with arthro-gryposis multiplex congenita, hip dislocation, scoliosis, kyphosis, and torticollis. To say that it was painful and nearly impossible for her to walk is an understatement.

 

Lilly had just gotten a new set of prostheses last fall when wildfires began raging in Northern California.

Photographs courtesy of Hanger.

"It [arthrogryposis multiplex congenita] is a huge, long ugly word that basically means lack of joints," says Lilly's mother, Jessica Biagini. "Lilly has always made her own decisions and she's very proud of that. It was one hundred percent her decision to have the amputations."

 

Before Lilly's amputations, when her mother wasn't carrying her, Lilly used a wheelchair. Lilly was six years old when she saw a television commercial showing a man walking with a prosthesis. Biagini says Lilly promptly announced to her, "‘Mom, I want to walk one day.'" Biagini remembers telling her daughter, "You're perfect the way you are. God made you that way."

 

One afternoon while at an appointment at Shriners Hospitals for Children — Sacramento, Biagini left Lilly alone in the exam room with her physicians. While Biagini was gone, Lilly says she told them, "I don't want any more surgeries." "Too bad, you're only six," she says one of them told her.

 

Lilly pressed on, explaining that she wanted to walk. When Biagini returned, she was informed by the doctors about the girl's desire to amputate her legs. "I asked her, ‘How are you going to walk?' And then this serious, studious little girl said with confidence to me, ‘I'm going to cut my legs off,'" Biagini says.

 

It took Lilly three months to convince her mother that she wanted to do the surgery. "She's a sassy girl who doesn't see herself as being disabled," Biagini says.

 

"I just got tired of always being in pain," remembers Lilly, who was born in Santa Rosa, California, and is now a third grader who enjoys snowboarding and swims "like a fish," her mother says. Lilly hopes to someday become a police officer.

 

Strength and Spirit

On February 13, 2014, Lilly underwent a nine-hour amputation surgery at Shriners. She received her first pair of prostheses three months later—lightweight carbon sockets with locking liners, Trulife Child's Play knees, and College Park Industries' Truper feet— at Hanger Clinic in Santa Rosa.

 

Lilly easily passed her initial test of walking between the parallel bars in her new prostheses, her mother says. "She held onto the bar once and then just walked out of there."

 

Lilly was already a patient at the Santa Rosa Hanger Clinic when Pola O'Rourke, CPO, became the area clinic manager in February 2015. "I met Lilly during my first week in Santa Rosa and I was bowled over by her spirit and strength," O'Rourke remembers. "It was right at her one-year ampuversary, so the clinic team got her a little cake and balloons to celebrate."

 

Since that first meeting, Biagini, Lilly, and O'Rourke have travelled to numerous events together, from Camp No Limits in Maine, to the Angel City Games in Los Angeles, and the Hanger Education Fair in Las Vegas. O'Rourke has been instrumental in fitting Lilly with her prostheses, which O'Rourke and Biagini estimate she outgrows about every four to six months. "We have been through a lot of sockets due to growth and trying to figure out the optimal set up for her to ensure her prosthetic success," says O'Rourke, who got her undergraduate degree in biomedical engineering at the University of Ulster, Coleraine, Ireland, in 2001, and her prosthetics and orthotics certificates from California State University, Dominguez Hills, in 2007 and 2008, respectively.

 

Lilly works with O'Rourke.

Lilly's latest set of prostheses are custom designed to support her needs, O'Rourke says. They incorporate Hanger Clinic's transfemoral ComfortFlex Adapt adjustable socket system that utilizes the BOA closure system along with SmartTemp locking liners. Lilly uses either her Truper feet or her Endolite Mini BladeXT feet depending on her activities for the day, O'Rourke says. The ComfortFlex Adapt BOA allows Lilly to have more control over the level of compression and control in the socket without having to add socks. "That way she is able to adjust her sockets during the day independently, whether she's at school or on the playground," O'Rourke says.

 

Of course, Lilly's personality is displayed on her prostheses. "Lilly is able to express herself through the cool fabrics that she always picks out for her sockets," O'Rourke says.

 

Everything Burned in the Fire

Lilly had just gotten a new set of prostheses last fall when wildfires began raging in Northern California. The last thing Biagini expected was to lose everything she owned in the fires, but her worst nightmare was realized on October 9, 2017. It was 1 a.m. when Biagini received a call that her 86-year-old grandmother (Lilly's great-grandmother) was in the path of the fire. "We left with only our nighties on and got in my mom's car to go get her," says Biagini, who carried Lilly to the car without her prostheses. "The flames were everywhere."

 

Fortunately, Biagini's grandmother made it to safety, and Biagini and Lilly also escaped the fire unharmed. They ended up at Biagini's sister's home in San Francisco wearing only their pajamas; all their possessions were destroyed in the fire. "We lost everything," Biagini says. "There was nothing left."

 

And that loss included all of Lilly's prostheses, her wheelchair, the special chair she used for bathing, and her other adaptive equipment. Biagini says Lilly said to her, "‘Mom, I just lost a part of my body.'"

 

Starting Over

Before Biagini could start the long, arduous process of replacing everything she lost, she knew she'd have to get her daughter ambulatory again. Biagini had recently lost her health insurance, so if replacing Lilly's prostheses meant putting a nearly $45,000 charge on her credit card, then she was prepared to do it. "She's a fearless little girl and I knew what I had to do to keep her that way."

 

That's when Hanger Clinic collaborated with manufacturing partners College Park Industries and Endolite to step in and replace Lilly's prostheses with a new set—at no cost to the family. "I'm not ever going to get over the surprise of that one," Biagini says.

 

Ask Lilly how she feels with her prostheses and she doesn't hesitate, "I am a powerful girl who will let nothing stop me from being successful. My legs that Hanger provided were an emergency pair that got me through until I could get a pair like I lost."

 

Though there is still plenty of rebuilding ahead of them, Lilly seems to be her happy, carefree self again, her mother says. Biagini has no doubt her daughter will overcome the tragic events of last October. "Ever since she learned how to talk, she has pulled me into her confidence," Biagini says.

 

Betta Ferrendelli can be contacted at betta@opedge.com.