Paralyzed Swimmer Banned From Paralympics Elicits Outrage

Committee told wheelchair-bound Victoria Arlen her disease isn't permanent.

August 14, 2013, 4:16 PM

Aug. 15, 2012— -- Victoria Arlen slipped into a three-year coma after experiencing flu-like symptoms at age 11. When she awoke, she was paralyzed from the waist down because of an autoimmune disorder that attacks the nerves in the spine.

The wheelchair-bound 18-year-old from Exeter, N.H., went on to find strength in the swimming pool, where she won four medals, including gold and broke her own record in one event at the 2012 Paralympic Games in London.

But her family, coaches and even her governor and two senators were outraged this week by a decision by the International Paralympic Committee (IPC) to disqualify the teen from the Paralympic Swimming World Championships in Montreal after ruling that her condition is not permanent.

"I am keeping my head held high and I am not bitter, discouraged or angry against them," said Arlen, who's in California clearing her head while visiting with her mother and boyfriend after the colossal disappointment.

"It is what it is," she told "There's not much I can do right now. It's in the hands of higher powered people."

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Her father, Larry Arlen, who owns a security camera business, is not as charitable toward the IPC. He said his daughter had her bags packed when she got the crushing news and was so upset she had chest pains.

"This kid has trained seven days a week for years and now she is being railroaded out," he said.

"No one has given us an exact answer," he said of the IPC's ruling. "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."

In London, Victoria was classified as between being a 5 and 6 in a system where 15 is nearly able-bodied. She swims with only her arms because she has significant upper-body impairment.

She resumed competitive swimming at the age of 16 and won her gold in the 100-meter freestyle.

"As a family, we are not negative people," dad Arlen said. "We just want her to swim. She is disabled. If you label anyone with a permanent disability ... there could be a cure for spina bifida tomorrow."

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A medical report from Dr. Michael Levy of Johns Hopkins University in Baltimore that was submitted to the IPC suggested that if Arlen were to get years of physical therapy, she might be able to 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."

Larry Arlen had asked Levy to evaluate Victoria to make sure she did not go into a relapse. "That has always been our biggest fear," her father said. "Almost losing her again."

The Germany-based IPC told that after the London games, it asked the U.S. Olympic Committee, which also represents Paralympic athletes, for a "more in-depth analysis" of her condition.

"This was provided by USOC on 24 July, after which any reference to Victoria Arlen's name was removed from the report and sent to five independent medical experts for their views," IPC spokesman Lucy Dominy wrote to in an email.

"All were in agreement that the report, its assessment and its diagnosis fail to provide sufficient evidence of an eligible impairment leading to permanent or verifiable activity limitation -- which is required under the IPC Swimming Classification Rules and Regulations."

Dominy acknowledged that the timing was "not ideal," but that once the report was complete, the ruling was made on the 2013 games in Montreal, which began Aug. 12.

Arlen's father said, "We've been up front with everybody. 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."

New Hampshire politicians, including Gov. Maggie Hassan, have rallied on the teen's behalf.

"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."

Victoria was struck with a disorder called transverse myelitis in association with acute disseminated encephalomyelitis or ADEM. "I got the double whammy," she said.

Transverse myelitis is a neurological disorder caused by inflammation of the spinal cord. Attacks can damage or destroy myelin, the fatty insulating substance that covers nerve cell fibers. This damage causes nervous system scars that interrupt communications between the nerves in the spinal cord and the rest of the body.

The condition occurs in both adults and children, but is often seen at younger ages. About 1,400 new cases are diagnosed each year in the United States, according to the National Institutes of Health. About 33,000 Americans have some kind of disability resulting from the disorder.

Transverse myelitis can occur as a complication of measles, Lyme disease and some vaccinations.

"It's not so rare," said Dr. Clifford B. Saper, chairman of the department of neurology at Beth Israel Deaconess Medical Center in Boston, who has not treated the teen, and in some cases it can be reversible.

"If someone were still paraplegic seven years after transverse myelitis, it would not be reversible," he told "So the only real question is whether she is paraplegic, not whether she had transverse myelitis as a cause. If she is, she should be eligible. If she is not paraplegic, then you might wonder why she should be competing with people who are. The story is moot on the only relevant point."

Victoria said she remembers "bits and pieces" of the years she was in a partial coma and vegetative state. "I kind of knew what was going on, but I couldn't verbalize or move," she said.

"It started off with flu-like symptoms and pain, then I started feeling really funny," she said. "In two weeks, I was paralyzed from the waist down and it spiraled down from there. Every ability I had was slowly slipping away."

Today, she is able to swim with her arms, but she does so with a lot of upper-body impairment.

It's too late for her to participate in Montreal, and her father said he is convinced the ruling was "political."

"Our [U.S. Olympic Committee has no notes what so ever that the IPC was waiting for any other medical records," Arlen said. "In fact, the new one we submitted stated another disease affiliated with TM is ADEM."

His daughter, on the other hand, has accepted her fate and is looking forward to continuing her motivational speechmaking and pursuing a career in film and television.

"I am doing OK," she said. "And there's not much I can do right now. I just have to put it all in perspective. I know there are a lot more problems to worry about in this world. As hard as it is there are people starving and dying in the world. It is such a blessing to be where I am today.

"I am going to keep my head up and move forward," she said. "I am not going to give up, though obviously there are not races for a little while. Swimming is still very much a part of me. They can't stop me from swimming.

"I love to swim and what I have been able to do -- give people hope," she said. "The fact that I am penalized for having hope is discouraging. If I didn't have hope and believe one day I would get better, I wouldn't be here today."

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