Earlier this year, Cortney and Ricci Stollsteimer were desperately seeking answers for their then-10-month-old daughter, Arlo, who has a movement disorder so rare her doctors call her a medical mystery.
Now one-year-old, Arlo is home on hospice.
Arlo experiences hours-long episodes of involuntary movements that cause her temperature to spike as high as 106 degrees. She has been in and out of hospitals since August without any signs of improvement.
Her mothers say she has a doctor for just about everything but still no answers.
"It just seemed like either her disease was progressing or her medications were not working," Ricci said. "We weren't real certain and neither were doctors, actually."
Ricci said Arlo also started to experience gastrointestinal issues as well.
"April 20, we went back to the hospital, which seemed pretty routine, actually, at first. We thought it was maybe medication management or issues with her GI tract," Ricci said.
Two weeks later, they were still as the hospital.
"They finally ordered an MRI of her brain and she had to be sedated for that," Ricci said.
The results were something no one was expecting.
"It showed that her brain and her brain stem were significantly atrophied," Ricci said. "Her neurologist, her geneticist, her doctors—nobody could have imagined how dramatically this had been happening."
The Stollsteimers have been home on hospice with Arlo since the first week of May, and they still aren't sure what to expect.
"Because her illness is unknown. So, there's a lot of, 'We don't know' around that. Based on the atrophying of the brain and the amount of time from her last MRI, the geneticist did say three months," Ricci said. "We didn't think should would make it through the weekend, but she did. So, we really just don't know. We're taking it moment by moment."
They are keeping her as comfortable as possible.
"We have a hospital bed in our front room where she sits and we have the whole window covered in sun-catchers for her and it's mostly just comfort-management and feeding," Ricci said. "She is finally able to take more formula. There was a few days where she wasn't able to get any nutrition that way."
Some days are better than others. Ricci said majority of the time, Arlo is asleep.
"But, today she did have a long period of time where she was able to have her eyes open," Ricci said.
As her parents, they will continue to hope. They are going to start a trial drug that has a 1 percent chance of stopping Arlo's brain and brain stem from continuing to atrophy.
"It won't improve what has already happened," Cortney said.
The Stollsteimers want to share Arlo's story as a reminder that life is short and precious.
"I think a lot of people have been impacted by her, and maybe in the future, if there's another child or anyone that has something that they can't find answers for, maybe more people will step in and help," Ricci said. "We were lucky to be able to share her story and to get lots of public eyes on Arlo and lots of people trying, and they're still trying, and I think even if she is to pass on, they'll continue to try and search for answers."
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