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St. Johns couple desperately seeks answers for 10-month-old baby with rare movement disorder

Cortney, Ricci and Arlo Stollsteimer
Posted at 12:03 PM, Feb 02, 2022

Two mothers in St. Johns are desperate for answers for their 10-month-old baby girl Arlo, who they adopted last month.

She's battling a movement disorder so rare her doctors call her a medical mystery.

Baby Arlo
Baby Arlo

Arlo's moms Ricci and Cortney Stollsteimer tried to have a baby almost immediately after they were married in 2016. But after years of fertility treatments without success, the couple began fostering.

Cortney and Ricci Stollsteimer
Cortney and Ricci Stollsteimer

That's how they met baby Arlo.

"On April Fools Day, actual — I kind of thought it might be a joke — We got a phone call that was life-changing, and they said they had a baby girl that needed a pre-adoptive placement," Ricci explained.

They had been chosen to foster Arlo.

Baby Arlo
Baby Arlo

"For the next two-and-a-half/three weeks, we spent every day and every night in the NICU with baby Arlo," said Ricci. "She just had kind of a traumatic birth."

"And then she had trouble eating," Cortney added.

"She actually never took a bottle until we started seeing her and working with her. She left being able to eat," said Ricci. "From then it was just tons of joy."

Arlo Stollsteimer is fighting a movement disorder so rare, her doctors call her a medical mystery
Arlo Stollsteimer is fighting a movement disorder so rare, her doctors call her a medical mystery.

Then, they started to notice some health issues.

"She was considered to be just colicky or maybe a reflux baby just because she was crying all day long."

But by August, Arlo started experiencing episodes of severe dystonic movements.

"When she has these episodes, her temperature goes up very quickly to 105, 106, and stays there until they can stop her movements," said Cortney.

Baby Arlo
Baby Arlo

These episodes can last hours.

"Her last one, we were in the emergency room five or six hours, and she was awake the entire time moving her body and couldn't stop," said Cortney. "I can't imagine how hard it is for her. I mean, just to watch it, it will break your heart."

Arlo has been in and out of the hospital since August. Her moms say she has a doctor for just about everything.

"It's nothing that the doctors have seen before," said Ricci.

Cortney said Arlo has had multiple EEGs, but doctors aren't seeing any seizure activity.

Baby Arlo
Baby Arlo

Ricci said the hardest part is not knowing what is causing her baby so much pain and not knowing what her quality of life will be down the road.

"Because they don't know the underlying disease, they can't tell us how often this might happen, how often she'll have to be hospitalized, if this will progress," said Cortney.

Arlo is currently at Sparrow Hospital. Dr. Kabelo Thusang is Arlo's neurologist.

Baby Arlo at Sparrow Hospital
Baby Arlo at Sparrow Hospital

"We've been talking to experts in the U.K. and also the children's hospital in Washington D.C. because they too have movement disorder specialists, since this is my first case," said Dr. Thusang. "If medication don't work, there's a surgery that's been done in adults, but it's trying to find somebody who can do it for a child."

The Stollsteimers hope that by sharing their story, it will lead them to answers.

"Our number one hope is to find maybe someone somewhere that has either treated another patient like this or maybe just has some different, totally out-of-the-box ideas about maybe testing they could do to find her underlying condition."

The Stollsteimers ask if anyone has any information or suggestions, to send ideas to BraveLikeArlo@gmail.com.

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