At age 11 she was struck with two autoimmune diseases that caused severe inflammation in her brain and spinal cord, triggering rapid deterioration to the point that she was in a vegetative state.
At just 23 years old, Victoria Arlen is a Paralympic gold-medalist, host on ESPN and the face of Jockey.
Looking at her impressive resume it’s hard to believe that less than 10 years ago Victoria couldn’t even control her own eyes, let alone move or speak.
On Wednesday the retired athlete from Exeter, New Hampshire, opened up about the horror of being locked in her own body for four years, completely aware but unable to assure her family that she was still there.
Four-time Paralympic gold medalist and former Dancing With The Stars contestant Victoria Arlen, 23, spoke out about the four years she spent in a vegetative state on Wednesday
At 11 years old rare autoimmune conditions caused Victoria’s health to deteriorate rapidly to the point that she slipped into a vegetative state for three years
Two years after she came out of the vegetative state Victoria swam her way to four medals at the 2012 Paralympic Games in London
Growing up, Victoria was an active child who loved to dance and swim, until around 11 years old when she came down with the flu and started experiencing asthma and fainting spells that gradually escalated into paralysis.
‘When I started getting sick I was just confused. I was asking why can’t I get out of bed? Why can’t my legs move?’ she said in an interview with Megyn Kelly TODAY.
Victoria’s mother Jacqueline said: ‘It was like a circuit board. Slowly things were getting switched off her legs were dragging, then her legs went, then her swallowing started to go and then I noticed that she was becoming less and less engaged.
‘There’s nothing worse in the world than watching your child deteriorate in front of your eyes.’
Over the span of just two weeks Victoria was paralyzed from the waist down, and within months she slipped into a vegetative state that would last for four years as doctors struggled to understand what had caused her rapid decline.
They told her parents that she would be in a vegetative state for the rest of her life, conversations that Victoria herself heard.
After three years she was ultimately diagnosed her with two equally rare conditions: Transverse Myelitis and Acute Disseminated Encephalomyelitis.
Myelitis refers to inflammation of the brain and spinal cord that damages or destroys myelin, protective substance that insulates nerve fibers, inhibiting communication between the brain and body.
Some people recover from transverse myelitis with minor or no long-term problems, but most suffer permanent impairments that affect their ability to perform ordinary tasks of daily living.
An estimated 33,000 Americans are living with some type of disability as a result of myelitis, which is not thought to be genetic.
There is no cure for the disease, but it was later revealed that if Victoria had been diagnosed correctly when she was first hospitalized in 2006, a simple steroid treatment would have prevented the vegetative state.
Victoria is pictured left just months before the autoimmune disorders triggered swelling in her brain and spinal cord and right while in the hospital when her condition was bleak
Victoria and her mom Jacqueline, left, appeared on Megyn Kelly TODAY on Wednesday
A movie about Victoria’s experience was shown at the Tribeca Film Festival last weekend. She is pictured on the event’s red carpet
Today, Victoria remembers almost everything that happened during the three-year period when her parents and doctors were doubtful that she was still in her body.
‘At first I didn’t realize I was locked in, I had sort of a fuzzy distorted memory.
‘Then all of the sudden my mom’s not responding, no one’s responding and I can’t move my eyes.
‘That’s when I realized they don’t know that I’m in here, they don’t know that I’m locked in.
‘I was terrified. There’s no worse feeling than being aware but not being able to communicate or give your family any sign that you’re in there.’
One of the memories that stands out for Victoria was the moment she decided she was going to recover.
‘We were in the ICU and the doctor walked in and said: “This is what I think she has, and you need to accept the fact that your child is going to die.” And then he left.
‘I saw my mom cry, and that’s when I decided: “I’ll be damned if this is how my story is going to end. I don’t want to see that again,”‘ she said.
Jacqueline said that the Victoria’s mysterious illness was very hard on their family.
‘Just because they didn’t understand what was going on, they couldn’t help us and we were very much alone,’ she said.
‘It’s different if you have a diagnosis of cancer or something [doctors] understand because they wrap around and have a plan.’
Before she became ill, Victoria was a very active child who loved to dance and swim. Jacqueline said it painful to watch her daughter’s condition deteriorate at just 11 years old
Victoria posted the photo above of her and her mom on Instagram last week
By the time she was 15 in late 2009, Victoria’s conditioned had worsened and she was having nonstop seizures 20 hours per day.
She hadn’t been sleeping so doctors gave her medication that ultimately didn’t put her to sleep but did stop the seizures by targeting the neurotransmitter that had been causing them.
Shortly after being given the medication, Victoria realized that she could control her eyes.
‘I took a look around and was like: “This is freedom,”‘ she said.
When her mom walked into the room Victoria locked eyes on her and tracked her, which Jacqueline quickly noticed.
‘I have these big brown eyes so ever since I was a baby you could tell what I was feeling and thinking based on my eyes,’ she said.
Jacqueline walked over to her daughter and asked her if she could blink to send a signal that she was in there.
Victoria to blinked furiously, and for the first time in years the family had hope.
‘I looked in her face and there was this calmness for the first time,’ Jacqueline said.
For the next six months Victoria had to slowly relearn everything from wiggling a finger to making noises with her vocal cords.
Because of the extensive damage to her spinal cord, Victoria’s doctors said she would be paralyzed from the waist down for the rest of her life, but she was determined to not let that slow her down.
Victoria is pictured above splashing around in the swimming pool at a very young age
In 2012 she won three silver medals and one gold in the 100-meter freestyle at the Paralympic Games in London
Within less than a year of regaining control of her eyes, Victoria was back in the swimming pool.
At age 17 in 2012, she competed on the USA Paralympic swim team at the London Games, bringing home three silver medals and a gold in the 100-meter freestyle, setting a world record in the event.
Victoria experienced all of the swimming success from her wheelchair, which she was determined to one day get out of.
‘I was told I would never walk again but I’m kind of stubborn in that sense. I mean, you’re not God you cant tell me what I can and can’t do,’ she said.
By April 2016 she proved the doctors wrong and was finally able to walk again.
Last fall she even competed on Dancing With The Stars, making it to the semi-finals.
Today she’s a sportscaster on ESPN and recently became the face of Jockey underwear.
‘By the grace of God I am in the best health I have ever been in,’ she said.
Victoria recently became the face of Jockey underwear, shown above in an ad campaign