Tallahassee woman meets Jacksonville teen battling same rare disorder

Published: Oct. 6, 2017 at 7:15 PM EDT
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By: Julie Montanaro| WCTV Eyewitness News

November 10, 2017

TALLAHASSEE, Fla. (WCTV) -- A few weeks ago we introduced you to Destiny Sasser as she prepared to walk in the MDA Muscle Walk.

The Tallahassee woman is battling an exceedingly rare disease called Andersen-Tawil Syndrome.

Fewer than 100 people worldwide have been diagnosed with it, but thanks to our story, Destiny got a message from a teen in Jacksonville battling the same thing.

We were there when they met for the first time.

"It's nice to finally meet you. Can I give you a hug?"

Destiny Sasser had never met anyone - besides her dad - with Andersen-Tawil Syndrome. That changed this week in Tallahassee's Cascades Park.

"I was completely overwhelmed and I got super emotional," Sasser said. "I never met anyone with the same condition as me ... I'm about to start crying again," she said with a laugh. "It was just incredible."

"It meant so much to me," Paige Richards said. "I talk to people who have the same condition as me because it makes me feel more normal. Most people still avoid me because of what I have."

"You feel very isolated," her mother Wendy Richards said. "So it normalizes it. We're all just normal people and Tallahassee's not that far away."

15 year old Paige Richards struggled for years to find out why her body kept freezing.

"I've even had a psychiatrist tell me it's all in my head," she said.

Both young women cope with bouts of periodic paralysis that can last a day or a week or longer. Both families pushing for a diagnosis ... some medical explanation for it all.

"I just went doctor appointment to doctor appointment. It was just one thing after another," Destiny's mother Amanda Sasser said. "I'm going to find out. I'm not going to quit fighting."

"Of all the forms of periodic paralysis, Andersen-Tawil's the hardest one to pinpoint," Paige's mother Wendy Richards said.

Now, finally someone who understands, who can compare notes and can help spread the word about this rare genetic condition.

"Aww ... It's so cute!"

Paige's mother brought a surprise gift for both young women. Matching Zebras. They're symbolic of rare conditions. A sign that though rare, they're not alone.

It's a memento to commemorate "meeting a fellow zebra," she said.

Both young women also now belong to a Facebook group that connects periodic paralysis patients.

By: Julie Montanaro | WCTV Eyewitness News

October 6, 2017

TALLAHASSEE, Fla. (WCTV) -- A Tallahassee woman is one of only about 100 people in the world to be diagnosed with a rare neuro-muscular disease.

Destiny Sasser is a TCC student juggling classes and a full time job.

She also has to juggle bouts of paralysis that can stop her in her tracks.

Destiny Sasser is studying to be a special education teacher, hoping to make life easier for other children with challenges.

"I just take it one day at a time," Sasser said with a smile.

Sasser knows the struggle.

"Sometimes my muscles just don't want to work. I can't lift my arm sometimes," Sasser said. "Sometimes I limp a little bit and I've been asked why do you walk like that?"

Sasser has a rare genetic disorder called Andersen-Tawil syndrome. It plunders the body's potassium channels and can leave her limbs weak or suddenly paralyzed. Sometimes for 24 hours. Sometimes a week.

"Sometimes it's just randomly or one day I'll be okay-ish and it just slowly sometimes gets to where I can't move," Sasser said.

According to the National Institutes of Health there are only about 100 other people in the world who've been diagnosed with ATS. Her dad is one of them.

"It's a little overwhelming," she said.

Her father Gordon Sasser says he's been dealing with the symptoms since about the fifth grade, but no doctor could diagnose it or name it until his daughter was diagnosed at the age of 13.

"I went through life knowing that there was something going on, i just wasn't sure what," Gordon Sasser said.

"We've been able to work through things together," he said. "It's not curable, but it is controllable. So, we're blessed in that aspect of it."

"We're blessed with a mild case of Andersen-Tawil," Destiny Sasser said.

Most days Sasser is full speed. Potassium supplements and a chiropractor seem to do wonders, but once a month or so,

Andersen-Tawil syndrome sidelines her.

"She works like twice as hard as anybody else to just live a seemingly normal life," Destiny's best friend Alexis Frick said. "She hasn't really let anything set her back, hold her back, she does what she can."

This weekend Destiny and those who keep the bubbly 18 year old moving and motivated will walk together to raise awareness.

"Not everyone looks like they have something," Destiny said. "You never know what someone's going through."

Destiny and her family will be walking in the Muscular Dystrophy Association's Muscle Walk Saturday.

More than a dozen teams have already signed up.

WCTV's Julie Montanaro is serving as emcee.

Registration starts at 8:30. The walk starts at 9:30 at Southwood's Town Center.