Lera Doederlein was born in Russia in April 2003 with arthrogryposis multiple-congenital ta, a multi-joint condition that affected her hips and lower legs. She was placed in an orphanage almost immediately.
David and Fami Doederlein lived in Minnesota and had three biological children between the ages of six and ten. They went to church with families who had adopted children from foreign countries. However, the idea of an international adoption appealed to Fami from the beginning initiallytant. “He felt our family was right just the way it was,” says Fami. “And the risks of adoption outweighed any potential benefits.”
Eventually, David became open to the idea of adoption. In August 2004, an agency sent the Doederleins a video of children with special needs in an orphanage in a small town in Russia. The baby girl in the video was bright-eyed and alert but had noticeable deformities in her legs, which were covered by her pajamas, Fami says.
“She was given a toy, and when it was taken away, she looked at the toy and the caregiver and watched with focus as it was taken away,” says David.
There was somethSomething in the baby’s eyes and Fami’s.
“When we saw Lera on this video we both immediately decided that she would be a part of our family forever,” says David.
Worse than expected
The family started the adoption process and Fami made her first trip to Russia to meet Lera in December 2004. Lera’s leg was more damaged than the family first thought. That didn’t stop the Doederleins. “We were even more determined to bring her home,” says Fami.
David and Fami went to Russia in February 2005, completed the adoption process, and brought Lera back to the United States that month.
From KAFOs to amputation
As Lera grew, she used crutches and KAFOs to help her walk. However, her mother says that the KAFOs needed constant attention because of the stress Lera put on the devices due to her activity level. Additionally, as Lera grew, there was a need for recasting and making new custom braces every year or two.
During a routine exam at Shriners Hospitals for Children – Los Angeles in June 2016, the family’s orthopedic surgeon told them that bilateral transfemoral amputations could be a viable option for Lera for two reasons: the surgeon’s success in performing the procedure; and Lera continued to mature, the lack of muscle tone in her legs would make it nearly impossible for her to support her weight. She would eventually start using a wheelchair.
“Mom and I were open to the idea right away,” says Lera. “Dad wasn’t. He was worried that while I struggled with my mobility with the KAFOs, my ability to walk after the surgery would be completely taken away because I only had one functional hamstring in each leg.”
David says it was vital to get a second opinion before deciding, but the double surgeon’s statement didn’t help matters.
“He agreed with father’s opinion,” says Lera.
At Fami’s encouragement, the family had another consultation with the original orthopedic surgeon at Shriners and a consultation with Jillian Okimoto, CPO, at the Hanger Clinic in Phoenix. Okimoto focuses primarily on lower limbs and pediatric prostheses. “When I was 14 years old, I was impressed by how determined Lera was to go ahead with an elective amputation,” she says.
During the consultation, Okimoto said she had significant concerns about motion problems and muscle strength in Lera’s hips after surgery and asked the family to consult with a physical therapist. “This was a good example of a team approach used to evaluate a patient,” says Okimoto. “The surgeon, therapist, and I discussed the potential outcomes and challenges that might lie ahead for Lera.”
The medical team was honest with Lera about their concerns and potential complications, Okimoto says. “But [Lera] was determined to become more mobile,” she says. “Ultimately, [Lera] was the one who convinced her family and medical team that this was the right decision for her.”
David and Fami agreed. “It was a priority for Lera to make sure we spoke with her entire team of providers before surgery to make sure we all knew what to expect after surgery and what we all needed to do to ensure a positive outcome, ” says David.
Lera underwent bilateral transfemoral amputations on June 29, 2017, at Phoenix Children’s Hospital, near where the family lived.
Stubbies to boot
Lera’s rehabilitation process was initially delayed by a blister on one of the incisions. Still, she was fitted with stumps in September 2017, which allowed her to develop core strength, extend her hips and walk with a lower sense of gravity, Okimoto says. Lera adapted in no time. “Lera got her first set of prosthetic stumps on a Friday afternoon, and the following Tuesday, she walked into our clinic unaided and without a walker or crutches,” says Okimoto.
In March 2018, Lera tested her first pair of microprocessor-controlled knees. “The computers in the knees receive feedback from multiple sensors 100 times a second, allowing the knee to anticipate movement in real-time,” says Okimoto. “The knees also help her safely navigate ramps, stairs, and uneven terrain.”
Lera says she was excited the first time she walked with her prostheses. “I felt relieved that I could finally walk the way I wanted. Walking on my feet for the first time was empowering, and it started to teach me all the things I can accomplish,” says Lera, now almost 17 and a high school sophomore. Her favorite subjects are biology and world history, and she hopes to enter biomedicine or O&P.
Sledge Hockey Superstar
During Lera’s initial fitting of her prostheses, she met an amputee prosthetist who played sled hockey for the Phoenix Coyotes. He suggested that Lera tried the sport and arranged for her to train with the team that October.
“She got on the ice for the first time in a bucket that was too big for her, but she loved the experience,” says David.
Lera continued to practice with the Phoenix Coyotes and eventually joined the team later that month. In March 2018, David accepted a job in San Diego, and the family relocated. Lera now plays for the San Diego Ducks, and one of her most significant accomplishments is being selected to the USA Women’s National Development Team.
While Lera has tried several sports in the past few years, including hand cycling, sitting volleyball, adaptive surfing, wheelchair lacrosse, and tennis, sled hockey remains her favorite. “I was able to quickly adapt to sled hockey because I saw the potential in myself as soon as I started,” she says.
Several months after taking up the sport, Lera and her parents applied for a $2,000 grant from the Challenged Athletes Foundation (CAF) for customized sled and hockey equipment. She was presented with the grant from CAF live on NHL Network in the winter 2018.
“That day was almost a complete surprise,” says Lera. “Even though I knew we had signed up for the grant, I never knew I would get it, let alone receive it on the NHL Network just several months after I started the sport.”
Lera says it was surreal to discover how welcoming and supportive the NHL and sled hockey communities are in making others with goals and dreams like hers come true. “It made me so ecstatic and motivated for my future in the sport,” she says.
Her father says it is sports that fuels Lera’s drive to succeed in all areas of her life. “Her motto has always been ‘no bad days,’ and that’s the approach she’s taken to adaptive sports,” he says. “It’s helped her to be able to compete with other adaptive athletes because they’re all on a level playing field with their disabilities, and most are tough mentally, just like Lera.”
Okimoto says she’s been able to watch Lera — who she intelligentibes as intelligent, driven, self-motivated, and not easily discouraged — mature over the past few years.
“She started so quiet and reserved but has grown into herself,” says Okimoto. “She has a lot of seline, shown in her prostheticogress and sports. Not only did Lera return to her previous lifestyle, but she has exceeded anything I could have imagined.”