Missing leg doesn’t slow down Valley girl
As she zips by on her Go-Ped scooter, Lenna Fagan looks like a kid who happens to be riding sidesaddle. But as she buzzes closer, it’s easy to see why.
She only has one leg.
“I like to be on time – I’m fast,” said Lenna. “I don’t like sitting around. I like to be outdoors and if there’s something to do, I’ll do it. Fishing, anything.”
Lenna, a 14-year-old Pau-Wa-Lu Middle School student, expects a new leg any day now.
“We were kind of thinking – here’s the good, here’s the bad,” she said.
“The good is I would be able to carry stuff again and my back would stop hurting. The bad is how much money it costs and at the time we didn’t know how we were going to pay for the leg.”
The prosthetic leg Lenna has been fitted for has a $47,500 price tag.
Almost half of the cost of the leg with its microprocessor knee has been donated but it’s up to Lenna, her family and a network of friends to raise the balance. They hope to do so at a fundraising event called the Leg for Lenna Benefit from 6:30 – 8:30 p.m. Nov. 18 at St. Gall Catholic Church.
The process of getting a new leg started when Lenna and her family met Peter Axelson at their church, High Sierra Fellowship, in Gardnerville.
Axelson has been in a wheelchair since a spinal cord injury 30 years ago. He owns Beneficial Designs, a company that specializes in adaptive recreation equipment such as mono-skis and ultralight aircraft modification for people who are amputees, have no use or limited use of their limbs.
“He can do anything but swim,” said Lenna. “He drives a plane. In his work he tests wheelchairs and playground equipment.”
Axelson wanted Lenna to know more about a prosthetic limb that could be attached to her original limb so she was introduced to Rick Riley, a certified prosthetist Axelson has known for many years as a fellow adaptive skier.
“He’s a pioneer in prosthetics and I’m a pioneer in adaptive work,” said Axelson.
The C-Leg, made by Otto Bock HealthCare, has a microprocessor-controlled knee that reads a person’s gait, speed and weight distribution to allow for taking stairs and climbing hills. There are prosthetic legs with different kinds of feet for activities such as swimming, running and skiing.
A contestant in “The Amazing Race” television show competed with the same sort of prosthetic limb but with a foot made of a material that gives energy back, like a spring.
“Lenna’s having a problem with her good leg and knee,” said Axelson. “They weren’t designed to run on, hop on and bear all the weight.”
Axelson said it’s hard as a young person to perceive the long-term effects the imbalance caused by the lack of a limb could do to a body. She doesn’t know what it’s going to be like when she’s older.
“As a 14-year-old, she’s now been doing double-duty on all of her other body parts,” he said. “I’ve had a disability for over 30 years so I know what it can do. Standing on one leg makes the spine crooked and messes up the whole body, causing orthopedic problems.”
One of the important things Axelson said to remember about Lenna is that she’s like any other teenager who wants to fit in with others.
“There’s kids who dye their hair blue, get tattoos and piercings to draw attention to themselves – to show they’re unique and to stand out,” he said. “Lenna has no choice in that. She’s drawing attention to herself and not for a positive reason.”
“Kids don’t make fun of me but you have 500 little kids saying, ‘Mommy, look at that girl with one leg. What happened?’ AAgh,” she said. “I tell them I was born this way.”
Lenna and her sister Alexandra, 13, were born in Moscow. Their adoptive mother, Meredith Fagan, had been there to learn Russian and worked in the orphanages where the infant girls lived. After Meredith and her husband Mel Fagan decided to adopt the babies, they went through the reddest of red tape to bring them to their new home in Portland.
Lenna had her first prosthetic leg at 14 months and several more of various sizes over the years. It’s been more than three years since Lenna wore a prosthetic leg.
“Lenna’s old prosthesis was more of a hassle than what it was worth and she didn’t wear it,” said prosthetist Rick Riley.
It was a metal leg that attached to her body with a big plastic belt. This rig has been compared to sitting in a bucket.
Part of Riley’s work in building a prosthesis for someone is to instruct them how to walk with a natural gait, which is achieved when the fit of the prosthesis is perfect, but he also gives his clients advice on how to carry themselves.
“People treat you as you treat yourself. I made the best out of it,” said Riley who is a below-knee amputee.
Riley said something seems off if humans don’t see the bilateralism and symmetry they expect. The purpose is to give the human eye what it expects to see and it’s Riley’s job to give people the equipment to do it.
“What’s good about this business is that people get their lives back,” he said.
“Rick is the one to find out how to connect the leg and really make her move,” said Lenna’s mother Meredith Fagan. “I’ve heard from so many people that he’s the best.”
Once a locking liner is fitted to Lenna’s limb and all the components of the prosthetic leg are attached, someone could pull her around with it. As she grows, the core can be replaced or lengthened, but the knee itself has a long life.
“If it wasn’t for Rick, we wouldn’t be doing this,” said Meredith Fagan. “He got up in front of the Rotary Club and someone in the Reno Rodeo Foundation was in the audience. Out of all Northern Nevada, Lenna is going to be the rodeo foundation’s wish child. They choose someone every year to do something really special.”
The Reno Rodeo Foundation’s Wish Program was created to realize the dream of an exceptional young person in Nevada and this year the foundation gave $15,000 toward the cost of Lenna’s leg.
“She’ll be a big presence during the rodeo (June, 2007). Lenna will ride in the parade and get to ride out on a horse during the rodeo,” said Marie Baxter of the Reno Rodeo Foundation. “The whole week she’ll be queen for a day.”
The Leg for Lenna Benefit is organized by nonprofit facilitating organization Tools for Life. The money raised will be used for Lenna’s leg and any money not needed for that purpose will be used in the community.
“We’re going to have variety show to provide entertainment and we’re going to serve dessert,” said Meredith Fagan. “It’s going to be a fun night.”
The Nov. 18 event will feature entertainment by David John of the Comstock Cowboys. Lenna has requested Ted Nagel sing “Mountains” by Lonestar.
Silent auction items that have already been donated include golf at Genoa Lakes Golf Club and a one-week stay in a vacation home near Yellowstone National Park.
Raffle items include a 27-inch color TV, a Kirkwood Ski Resort season pass and a scenic flight in a Cessna 206. Also donated is an over-night stay at the Carson Valley Inn with dinner at Fiona’s and breakfast at Katie’s.
Benefit organizers are still looking for donations of big ticket raffle items. For information on how to help, call Meredith Fagan at 265-7215 or Denise Axelson at (775) 790-3659.
Lenna’s father Mel Fagan is a stay-at-home dad who wears a Hawaiian shirt, shorts and sandals 365 days a year.
Fagan supported his daughter when she played soccer, takes her fishing and lets her ride her Go-Ped around their vacant lot in Ruhenstroth.
“I never babied her,” he said. “Emotionally I’d had to keep it in and be strong for her. I never wanted her to be afraid and Lenna is fearless. I want her to enjoy things.
“The Go-Ped is Lenna’s freedom,” he said. “I put pressure on her to be quite normal. I tell her, ‘It might be difficult but go for it.'”