WASHINGTON — 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 here — 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 in 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 of the Oregon Health and Science University, the leading research center for the disorder in the USA, to diagnose his daughter’s disease. Because fewer than 40 cases of INAD have been diagnosed in this country and 200 worldwide, little is known about it.
In most cases, infants and children develop normally until about 14 to 18 months, then they begin to experience difficulty walking. From there, they regress as toxins build up in their nervous systems, paralyzing the body’s functions. Doctors said Ainsley 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. At age 6, she started home-schooling, which now is limited to one day a week.
Her days consist of physical therapy, doctor appointments and breathing treatments to avoid a buildup of secretions 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 every day,” Lori Rossiter said. “Even if I’m just getting home, I spray on perfume because I want her to recognize my smell.”
But Ainsley is Daddy’s girl. And they have a special bond: running.
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 lit up in only a way you can imagine, like we hadn’t seen before,” Rooster Rossiter 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 10-kilometer 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 published this year.
“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 2011 Marine Corps Marathon was their first.
“These opportunities to run … (are) an opportunity to be active — to be included,” Rooster 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 has retired from marathons.
“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,” Rooster Rossiter said moments after passing the finish line at this year’s marathon.
Thirty other wheelchair-assisted athletes and their runners joined him at the start.
In 2012, Ainsley’s Angels of America, a nonprofit dedicated to raising money 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 joined with myTEAM TRIUMPH to establish a running coalition for the wheelchair-assisted athletes. About 10 chapters are running in races across the country.
“I don’t like it when I find out there is a race, and they don’t allow push chairs,” Rooster 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.”
Lori Rossiter 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 Rossiter said. “We didn’t stop living.”
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source: US Today