ST. JOHNS, Mich. (WLNS) — Two mothers in St. Johns are left with more questions than answers after the death of Arlo, their 2-year-old daughter.
She had a medical condition that doctors say they’ve never seen before.
Arlo was a strong willed little girl who fought every day since birth against her condition.
She lost that fight in April and doctors are still puzzled.
Her mothers said she lasted longer than anyone thought possible.
“She was strong, she went through a lot in her life, and she wasn’t going to leave until she was ready,” said Cortney Stollsteimer.
Cortney and Ricci Stollsteimer lost Arlo on April 19, to a disorder that doesn’t even have a name.
“We have no answers,” said Ricci.
Doctors have called it a medical mystery.
“She was doing therapies twice a week, she was having doctors appointments usually more than one a week,” Cortney continued.
Arlo spent her life in and out of Sparrow hospital, experiencing episodes of involuntary movements, dystonia and fevers spiking at 106. Things were consistently getting worse, as gastro-intestinal issues forced Arlo to eat through a tube.
Devastating news came in May 2022. An MRI scan showed that Arlo’s brain was atrophying.
“Her neurotransmitter levels in her spinal fluid were much lower, than they ever should be,” Cortney said.
At that point, doctors sent the child home on hospice, saying she had three months to live.
Arlo defied the odds though, as she lived almost an entire year.
The mothers sent in one last blood sample to be studied, with little hope for an answer.
“She made an impact in ways that I don’t think people thought were possible for a baby that was a quadriplegic,” Ricci Stollsteimer reflected. “We really did have a community around Arlo.”
Last week, the couple was able to donate 230 positional pillows to the Sparrow PICU, a place Arlo was for a majority of her life.
The mothers said they hope the community will understand that children struggling with these diseases are children, not just their condition.
“They’re still curious, they still want you to play with them, they still want you to talk with them, they know what your saying, they know what is happening, and I think that too often they are overlooked,” Cortney added.
The Stollsteimers are also starting a non-profit called Arlo’s Closet, where new foster parents can get free clothing for the first week of having their new placements.
The couple is always accepting donations, and people who could benefit from their service can contact them at bravelikearlo@gmail.com.
