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Running for her life: Marine Corps family brings joy to terminally ill daughter

Nov. 10, 2013 - 06:00AM   |  
Ainsley's Angels at Marine Corps Marathon
Ainsley's Angels at Marine Corps Marathon: Maj. Kim “Rooster” Rossiter pushes his terminally ill 9-year-old daughter Ainsley to the finishline in her last marathon. Ainsley was diagnosed with infantile neuroaxonal dystrophy, an extremely rare and fatal, genetic nerve disorder. (Medill Washin
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Maj. Kim “Rooster” Rossiter doesn’t let his daughter’s genetic nerve disorder keep her on the sidelines. Together, they’ve completed 57 races — including last month’s Marine Corps Marathon — with Rossiter on foot and his 9-year-old daughter, Ainsley Renee, in her running chair.

Rossiter, a faculty member at the Joint Forces Staff College in Norfolk, Va., was deployed to Iraq when his wife expressed concern that Ainsley still wasn’t wasn’t walking at age 15 months. He said it struck him as odd.

Five years ago, when he was deployed with the 26th Marine Expeditionary Unit, Ainsley was diagnosed with infantile neuroaxonal dystrophy — or INAD — an extremely rare genetic nerve disorder.

It took 24 months and the help the Oregon Health and Science University, the leading research center for INAD in America, to diagnose his daughter’s disease. Because there are less than 40 known cases of INAD in America and 200 worldwide, little is known about it.

In most cases, infants and children develop normally until about 14 to 18 months before they begin to experience difficulty walking. From there, they will regress as toxins continue to build up in the nervous system, paralyzing the body’s functions. And doctors said she wouldn’t live to see her 10th birthday.

“One of the most devastating aspects of that particular diagnosis is it’s terminal progressive, which to the layman means it’s going to kill her,” Rossiter said. “It’s horrible and it’s the reality of it.”

Ainsley’s infectious smiles became rare occurrences, and she eventually went silent. By age 4, she no longer could say the few words she had learned as a toddler. She required a wheelchair the same year. From age 6 through today, she started home-schooling, which now is limited to one day a week.

Ainsley’s days now consist of physical therapy, doctors appointments and breathing treatments to avoid secretion buildup in her lungs. Rossiter’s wife, Lori, said she’s not sure of Ainsley’s awareness level, and that she is losing her eyesight.

“I wear the same perfume everyday ... Even if I’m just getting home, I spray on perfume because I want her to recognize my smell,” she said.

But Ainsley is a daddy’s girl. And they have a special bond: running.

Running to reach new heights

On Dec. 10, nearly 500 people from around the country will join the Rossiter family for a virtual 10-kilometer race. They’ll run that distance, wherever they are, to celebrate Ainsley’s milestone — turning 10.

“What running has done for my family, it has provided a therapy like no other,” Rossiter said.

The father-daughter duo ran their first race together in 2008. The family made a decision not to let Ainsley be sidelined because she was in a wheelchair. Rossiter said he was inspired by Rick and Dick Hoyt, a father-son team who has completed more than 1,000 races and triathlons with Rick in a running chair.

“When we first had Ainsley enjoy the act of running in 2008, the wind from the Virginia Beach oceanfront blew in her hair and her face light up in only a way you can imagine, like we hadn’t seen before,” he said. “Her reaction was something we wanted to continue to see.”

In 2011, Ainsley’s older sister, Briley, now 12, wanted to keep the running streak going so she laced up her shoes and started racing with her sister in 5- and 10k races. Briley said running has replaced activities like playing and teatime that she used to do with her sister. Inspired by her sister’s silent strength, Briley wrote a book, “Born an Angel,” that was released in 2013.

“I want to share the message of inclusion. ... Especially with Ainsley because she can’t walk and she can’t talk and she’s very different than most people, and most people don’t understand,” Briley said. “They’re afraid so they stare and they judge. I don’t want that. I don’t want that for other kids, either.”

October’s Marine Corps Marathon was Ainsley’s second marathon. The two ran their first in the 2011 Marine Corps Marathon.

“These opportunities to run ... [are] an opportunity to be active — to be included,” Rossiter said. “She is included in this opportunity to have her own thing and I think that’s special.”

Because Ainsley’s disease continues to progress, she now has retired from marathon events.

“This is her final marathon — her scoliosis and other things — it’s best she doesn’t sit for five hours anymore, but together we were able to enjoy this father-daughter moment with friends and loved ones,”Rossiter huffed moments after passing the finish line at the 2013 Marine Corps Times Marathon.

He was joined at the start line by 30 other wheelchair-assisted athletes and their runners.

Ainsley's smile inspires family to share message

In 2012, Ainsley’s Angels of America, a nonprofit dedicated to raising funds for other wheelchair-bound athletes, was born. The foundation has raised more than $100,000 and purchased 70 racing chairs for running-assisted athletes across the country.

The running journey grew and Ainsley’s Angels of America came together with myTEAMTRIUMPH to establish a running coalition for the wheelchair-assisted athletes. There are now about 10 chapters running in races across America.

“I don’t like it when I find out there is a race and they don’t allow push chairs,” Rossiter said. “The overall goal [of the foundation] is ... a time where every road race has a division available for folks that require assistance and experiencing the thrill of an endurance event.”

Rossiter‘s wife, Lori, said each member of the family has found a way to deal with Ainsley’s terminal illness: Briley with her book, Kamden, by learning compassion at a young age and her husband through Ainsley’s Angels. But her message for families facing what seem like insurmountable difficulties is simple: Live on.

“I think she would be thankful we didn’t let her dystrophy stop us from being a family,” Lori said. “We didn’t stop living.”

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