A paralyzed, wheelchair-bound teen swimmer has been banned from competing in the Paralympic Swimming World Championships in Montreal after it was decided her condition is not permanent.
Victoria Arlen,18, fell into a three-year coma at the age of 11 after she was struck with a disorder called transverse myelitis in association with acute disseminated encephalomyelitis (ADEM). When she woke, she was paralyzed from the waist down.
The neurological disorder causes inflammation of the spinal cord and attacks or damages myelin, the fatty insulating substance that covers nerve cell fibers. Resulting scars to the nervous system interrupt communications between the nerves in the spinal cord and the rest of the body.
Arlen, from Exeter, N.H., is now wheelchair-bound but went on to compete in swimming events and has since won four medals, including champion gold at the 2012 Paralympic Games in London.
The teen, who had been prepping for the Montreal Championships, received the bombshell news this week that the International Paralympic Committee has disqualified her from competing in the World Championships in Montreal after ruling her condition is not permanent.
"I am keeping my head held high and I am not bitter, discouraged or angry against them," Arlen told ABC News.
Her father, Larry, however, is furious and says Victoria had her bags packed when word came and was so affected by the news she had chest pains.
"This kid has trained seven days a week for years and now she is being railroaded out," he rages.
Part of his anger is caused by what he feels is a basic error at the core of the IPC's decision.
"We've been up front with everybody," Larry said."What the IPC is telling people -- that they didn't get the medical records until July -- they have had 75 pages of medical records for six years. Last year in London was the only update … They are singling her out."
"No one has given us an exact answer," the outraged father added. "What kills me is their people have no experience with my daughter's disease and have given an opinion. They've got every disability in this organization, but this is discrimination. It's crazy."
The Germany-based IPC asked the US Olympic Committee, that also handles Paralympic athletes, for a "more in-depth analysis" of Victoria's condition after the London games.
Back at the 2012 Paralympic games In London, she was classified as between being a 5 and 6 in a system where 15 is close to able-bodied.
An initial medical report from Dr. Michael Levy of Johns Hopkins University in Baltimore submitted to the IPC suggested that if Arlen were to get years of physical therapy, she could walk again.
"It will take many months to years to get Ms. Arlen back on her feet. I did not mean to imply that Ms. Arlen would be able to walk quickly," Levy wrote. "Please do not misconstrue my plan as a statement of permanence of her disability."
IPC spokesperson Lucy Dominy told ABC News the report was sent to the committee on July 24, after which Arlen's name was removed and a further five independent medical experts were asked for their views.
All five experts agreed the report failed to provide sufficient evidence of an eligible impairment leading to permanent or verifiable limitation of activity, which is required under the IPC Swimming Classification Rules and Regulations.
At that point the ruling was made banning Arlens from the 2013 Montreal games, which began on August 12.
Back in the Arlens home state a strong sense of injustice has rallied support from New Hampshire politicians, including Govenor Maggie Hassan.
"Denying Victoria the opportunity to compete in an event for which she has trained diligently, and at the last possible moment, is unconscionable and patently unfair," Hassan wrote in a letter to the IPC.
"Moreover, the basis for ruling Victoria ineligible --- the possibility that she might one day be able to resume use of her legs --- is nothing short of disgraceful, undermining the very values of courage, inspiration, determination and equality that the International Paralympic Committee aims to promote," the governor added.
For their part, the Arlens are determined to stay positive. "We just want her to swim," Larry says.
"She is disabled. If you label anyone with a permanent disability... there could be a cure for Spina Bifida tomorrow."
As for Victoria, the New Hampshire seems resigned to missing out, "It is what it is. There's not much I can do right now. It's in the hands of higher powered people."