WASHINGTON — The world went dark for the Rossiter family in April 2007.
“We enjoyed our nice family of five … until times changed and we received our diagnosis,” said Maj. Kim “Rooster” Rossiter, a faculty member at the Joint Forces Staff College in Norfolk, Va.
Doctors told Rossiter and his wife, Lori, that their middle child, 4-year-old Ainsley Renee, would not live to see her 10th birthday.
But on Dec. 10, nearly 500 people from around the country will join the Rossiter family for a virtual 10-kilometer half marathon, running 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,” said Rossiter, who ran his first race pushing Ainsley in a running chair in 2008. 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,” Rossiter said. “Her reaction was something we wanted to continue to see.”
Five years ago, Rossiter was on active duty with the 26th Marine Expeditionary Unit aboard the USS Bataan, Ainsley was diagnosed with infantile neuroaxonal dystrophy, or INAD, an extremely rare genetic nerve disorder.
“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.”
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.
“My wife voiced some concerns in letters and phone calls while we were in Iraq and told me that Ainsley still wasn’t walking, and at this point, 15 months, struck her as odd,” Rossiter said.
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.
Ainsley’s infectious smiles became rare occurrences, and she 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, doctor’s appointments and breathing treatments to avoid secretion buildup in her lungs.
Lori Rossiter says she’s not sure of Ainsley’s awareness level, and 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. They have a special bond: running.
Running Takes Family to New Heights
In 2008, the Rossiters made a decision: they weren’t going to let Ainsley be sidelined because she was in a wheelchair.
“These opportunities to run … (are) an opportunity to be active — to be included,” said Kim Rossiter. “She is included in this opportunity to have her own thing and I think that’s special.”
The father-daughter duo ran their first 5-kilometer marathon in their hometown of Virginia Beach, Va., in 2008.
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.”
Ainsley has been in 57 races, including two marathons, with her Marine father. The first marathon was the 2011 Marine Corps Marathon in Washington; the final marathon for the running-assisted athlete was the same race two years later, on Oct. 27.
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,” huffed Kim Rossiter 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 of mTT:Ainsley’s Aingels 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,” Kim 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 says 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 Kim 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.”
