Dancing through a difficult diagnosis: A girl’s journey with ADEM

Portsmouth

PORTSMOUTH, Va. (WAVY) — The Fish Bowl Parade in Portsmouth has been a tradition for more than half a century.

It’s a family event that allows organizations to put their best foot forward and strut it or cruise across High Street. This year, the event was held Sept. 25.

For one dancer in the parade, stomping and strutting in her sparkly shoes, it was a performance she worried might never be possible.

It takes hours and hours of practice to prepare for the Fish Bowl show, but the blood, sweat, and tears are nothing new for 10-year-old Dehaviland Evans.

“Dehaviland is a fighter. She was determined,” said Dehaviland’s father, Gary Evans.

Her spins and high kicks all came to a screeching halt four years ago. Evans says it started with a cold followed by a collapse.

“We were awakened by a bump or thump on the floor, and she was on the floor. She was just drooling from the mouth she was crying,” said Evans.

In a matter of minutes, Dehaviland went from dancing to not being able to talk, walk, or eat. She was rushed to the Children’s Hospital of The King’s Daughters — her family sad and scrambling for answers.

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“We went to go see her and I saw my sister laying in that bed, I was like that’s not my sister. It hurt me and made me cry because that’s my baby sister and I didn’t want to see her go through that. I wanted to take her place,” said Dehaviland’s sister, D’Naja Trower.

“I said is ‘My baby going to die.’ Because it seemed like the stuff, she was going through she was laying there, and she was helpless,” recalled Evans.

Doctor Michael Strunc, the neurologist who’s treating Dehaviland, says his team quickly realized she was dealing with a nervous system disorder. She was diagnosed with acute disseminated encephalomyelitis, also known as ADEM.  

BELOW: Extended story: Dancing through a difficult diagnosis: A girl’s journey with ADEM

“It can affect your balance, your coordination, your motor skills, your speaking, your eating — it can affect your vision,” said Strunc.

It’s a brief but intense attack of inflammation in the brain and spinal cord and occasionally the optic nerves that damages the brain’s myelin.

“This rare disorder, it evolves pretty fast. This rare disorder, when it happens, it doesn’t happen over many many months. It happens over hours or days,” explained Strunc.

Strunc says they treated Dehaviland with steroids, and she got better briefly. Then, she went home and got worse.

“She went back down. On top of this, she had a new symptom: she couldn’t see at all. Yeah, she totally went blind,” said Evans.

Strunc says ADEM can be deadly in rare cases and is mainly seen in children 8 to 10 years old.

“Her case was a little bit different in that this rare disorder for her was really intense and severe. [That] is very unusual,” Strunc said.

Then, things finally took a turn for the better when she was put on a low dose of chemotherapy treatment and a high dose of love from her siblings, who always knew how to make her smile.

“Her SpongeBob pillow, teddy bears, her favorite teddy, the Mickey Mouse teddy bear,” one of her brothers, Jevell, said.

“I used to walk by her bed and just hold her hand… Every day, I come back, she used to like squeeze it a little, then every day squeeze it a little more. She just got her strength back,” remembered her other brother, Raheem Trower.

Her siblings say they could start to see their fun-loving sister breaking through the pain.

“She started wanting to go to the playroom. She started drawing and I was like ‘My sister. She’s coming back.’ And then when she started talking, I was like ‘Yes. Dehaviland is back.’ It made me so happy to hear her voice again, hear her talk, see her walk, see her push through all that stuff. It was amazing,” said D’Naja.

“I love them, and they never leave me alone and they’re always by my side and we always stick together, and we do stuff for each other,” Dehaviland said with a smile.

After months of different immunotherapies and chemotherapies, Strunc says she’d defeated the rare disorder, but that was just the beginning of the road to recovery.

“She was essentially done with the disease but left injured. Then had to spend the next couple years really rehabilitating,” said Strunc.

Over the past few years, she relearned it all. First came her speech, then her first steps, and now, she’s back in the dance studio doing what she loves, picking up right where she left off.

“She’s more focused now. At first, she was just dancing because she enjoyed it, but now that she missed it, she’s like ‘I’ve got to get this, I want this for real now.’ So, she’s more determined now,” said her dance coach for Glam Kidds, Traonte Jones.

Dehaviland is a poised dancer but also a fierce fighter who took her achievements one step further by dancing in the Fish Bowl parade for an entire one-mile stretch.

“It was actually amazing, I thought she was going to give up at some point, I kind of saw her legs a little wobbly because I know she still was weak, but she pushed through and kept going which gave me the strength to be her cheerleader,” said her mother, Likisha Wyche, smiling.

It was the performance of a lifetime, stomping the rare disorder, all in her sparkly shoes.

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