Remarkable Women: Local woman pushing for bill to help families facing rare disorder

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Rohnda McCloskey's House Bill 488 aims to mandate health coverage for children diagnosed with PANDAS

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A Lisbon mom is on a mission to make sure parents of children diagnosed with the rare disease known as PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) get the support they need.

Rohnda McCloskey is a tireless advocate for families who have a child diagnosed with PANDAS, an oftentimes misdiagnosed disorder associated with strep throat in kids.

She knows first hand how hard it is to navigate this diagnosis because she’s lived it, something 33 WYTV previously covered in our Keeping Kids Safe segment.

McCloskey’s mission is to help families fighting through the exact same uncertainty.

“It started with just basically myself and one other mom. We had this idea that we wanted to write legislation that would require insurers to cover the treatments for PANDAS,” McCloskey said.

Treatments that can run upwards of $10,000 to $20,000 out of pocket.

McCloskey is leading the charge in Ohio.

“It’s been quite a journey. It’s taken a lot of work. There’s a handful of us that got together and we wrote a House bill — House Bill 488,” she said.

HB 488 mandates health coverage for children with PANDAS, covering everything from their diagnosis and treatment to any testing they may need.

State Representatives Candice Keller and Anthony DeVitis are sponsoring the non-partisan bill.

“It’s been assigned to the Health Committee, that’s the committee that will review it. Hopefully, viewers out there will call their representative and support the bill,” McCloskey said.

After months of misdiagnosis and a desperate plea on Facebook, McCloskey’s daughter Clara was finally diagnosed with PANDAS back in 2017.

It was recommended that Clara begin IVIG treatments not covered by insurance. Another hurdle, not many doctors are even willing to make this diagnosis.

McCloskey knew something had to change and even when we interviewed her for Keeping Kids Safe two years ago, she wanted to write a bill.

“Hopefully with this bill, they’ll be more buy-in from the medical community including local doctors. We have a few in Ohio that are really good but we need more because there are a lot more kids out there that need to be diagnosed and treated,” McCloskey said.

But for McCloskey, this journey really started years ago when she was battling health issues and not getting any answers of her own.

“I’ve had at different times three rare illnesses myself. I’ve had brain surgery twice,” she said.

“Because of all of that, she still continues to have the resiliency to do everything that she can to advocate for everybody and do all the things that she does,” said Wanda Macklam, McCloskey’s mom.

As much as her daughter inspires her to be a remarkable woman.

“She just makes me so proud, I mean, I’m just amazed. I have never in my life been able to do anything like that,” Macklam said.

McCloskey is just as inspired by her mom.

“I learned from my mom, my mom’s the one who has taught me everything. She’s just a great leader, she was ahead of her time. When you’re surrounded by that, you learn a lot about being a leader and doing remarkable things, whether it’s for kids or women or men or just people in general. It just means a lot,” McCloskey said.

McCloskey is one of four local women who will be considered for Nexstar’s nationwide 2020 Woman of the Year Award. 33 WYTV will choose the local winner this Friday, March 8 during Daybreak, starting at 5 a.m. That winner will receive a once-in-a-lifetime trip to New York City to attend a taping of The Mel Robbins Show. The national winner will then be named in mid-March.

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