SHAWNEE, Okla. – A now seven-month-old Oklahoma girl is the youngest known to be battling that rare polio-like illness known as “AFM.”
The fight is tough because, without much research, doctors are still learning how to treat it – especially in a child so young.
News 4 was the first to share her story a few months back and now we’re checking in with this tiny trailblazer.
It’s what we long for at the end of the storm, but here in Oklahoma, a tiny trailblazer and her parents don’t know when they’ll reach their rainbow.
“I think it’s easy to put your faith in God and trust in God when things are going well but when things aren’t going well, it’s a whole different kind of trust and it’s a whole different kind of faith.”
It’s been months since a mother’s intuition was triggered as Gretchen Trimble picked up her daughter from daycare.
Opal was fussy and weak – far from her normal sweet, fun-loving self.
That was the beginning of countless doctor appointments.
Every test – came up negative.
Every day – Opal’s condition declined.
“The first few weeks were scary, they were dark, they were tough,” Gretchen said.
Finally – at Integris Children’s she was diagnosed with the incredibly rare Acute Flaccid Myelitis – also known as AFM – or “The Polio-like Illness.”
AFM affects the central nervous system, weakening the body.
The condition, which is typically seen in children, wasn’t really even under the CDC’s surveillance until a spike of cases around 2014.
There’s no concrete cause, but the CDC believes viruses play a role.
At just three months old – little Opal is the youngest on record to be diagnosed.
“There’s an emotional toll I think that is taken on everybody when you’re marching into the great unknown,” said Dr. Michael Johnson with the Children’s Center Rehabilitation Hospital.
Opal could barely move or breathe on her own.
Because AFM is such uncharted territory, the Trimbles have a say in every treatment.
They are all experimental – some – like plasmapheresis, a blood filtration process, very dangerous.
“The risks with that were – we heard – ‘bleeding out’ a lot,” Gretchen said. “We were desperate to try anything that might help her recover and get better.”
Through those trials – the Trimbles clung to their faith.
For weeks, their faith was all they had.
Not even able to hold their baby girl.
When they finally could –
“I held her for six hours straight,” Gretchen said.
“It was something that I’ll cherish for the rest of my life because it was something that could not have been,” Josh recalled.
The Trimbles – from Shawnee – have two other children – just 3 and 5 years old.
They’re thankful for family who helps them divide their time.
But holidays in the hospital and time away takes its toll.
“That’s evident when we go home and our kids want to know ‘Are you staying here tonight, mommy?'” Gretchen said.
It’s a tough thing to explain to a child.
But what about a baby?
Josh found a way to communicate with Opal by beating on his chest.
You can see her repeating the motion in a now-viral video.
“This thought just hit me and I just began to take my fist and beat it on my chest as a reminder that I don`t want to leave but I am with you and to be reminded of that even though you`re 6 months old, this is more for me than it is for you that we share a heartbeat,” Josh said.
That video is just one of the many moments the Trimbles have bravely shared on Facebook.
A group they’ve created called “Opal’s Fight” now has over 4,000 members.
“I feel like I get messages from people every day saying ‘I wake up and I wonder how Opal’s doing so I check Facebook,'” Gretchen said.
And there is progress to share.
Opal has been moved to Children’s Center Rehabilitation Hospital.
She’s gradually built up her ability to be off the ventilator from just a few hours to an entire week at a time.
Her reflexes are also coming back.
It’s not clear where that journey will take them.
But Opal is leaving her mark along the way.
“She’s an impact person,” said Josh.
“We feel honored to share Opal’s journey because God’s hand is evident in it,” Gretchen said.
There are a lot of unknowns ahead in Opal’s journey.
Her parents are just so thankful for the doctors and community getting them through it all.
Health officials don’t know of any preventative measures because there’s no clear cause of AFM.
They ask parents to watch for a sudden onset of difficulty in normal motions.