Through journey with rare autoimmune disease, Scranton girl continues to smile

By SARAH STORTZ
s.stortz@carrollspaper.com

Porter Gibson, daughter of Breann and Bryan Gibson, is “a spitfire.”

Similar to a Sour Patch Kid, Breann described her three-year-old daughter as a spunky girl with a huge heart.

“Everybody remembers Porter,” Breann said. “There’s something special about her. We don’t know what it is, we don’t know if it was preparing us for what we’re going through now, but she just has a one-of-a-kind personality.”
Despite dealing with a rare disease, Porter’s spirits haven’t dwindled.

A year ago, the Scranton girl was diagnosed with opsoclonus-myoclonus-ataxia syndrome (OMAS), a rare autoimmune condition that usually affects young children. In 2021, Porter was one of 74 children diagnosed with the disease.
According to her mother, her journey with OMAS all started on Nov. 3 of last year.
Breann was eating dinner with her family at a Mexican restaurant and talking with Porter, who was sitting across the table from her.

While looking at her daughter, Breann said she noticed her eyes moving rapidly. Before their food arrived, Breann was paying closer attention to Porter.

“When our food had come, I watched her try to pick up one of her french fries with her right hand and it was almost like watching somebody with advanced Parkinson’s trying to eat,” Breann Gibson said.
However, she also noticed Porter’s other hand was fine. After they were done eating, Breann sat in her car and debated on whether to take her to the ER or visit her doctor tomorrow morning.

The more she thought about it, thinking Porter’s issue was neurological, Breann said she thought it’d be best to take her in just in case it got worse.
She first took Porter to the Greene County Medical Center ER, where they referred the young girl to Blank Children’s Hospital in Des Moines.
Porter underwent several tests, including a CT scan and an MRI, all coming back normal.

She also had an MIBG scan, which detects a neuroblastoma tumor, often the cause of OMAS. However, the doctors never found one.
Oddly enough, Breann said, OMAS can also be caused by a viral illness, but Porter was never sick anywhere near the time of the onset of her symptoms.
Breann said neuroblastoma tumors can regress and dissipate out of the body due to the immune system fighting it off and getting rid of it.

“With her, what happens is her B cells attack her nervous system,” Breann said. “So her B cells were extremely elevated and that was what was causing the autoimmune response, like her body after it got rid of the tumor, it didn’t stop fighting itself.”

Following Porter’s CT scan, Breann said she remembered a doctor mentioning OMAS, but the physicians only diagnosed children with the disease when they found the neuroblastoma tumor
After two weeks at Blank Children’s Hospital, Breann said she felt the medical team did everything they could, asking if she could transfer to another hospital with more specialized care.
One of the neurologists at Blank Children’s Hospital knew another professional in Kansas City, who specializes in OMAS. With the help of the Children’s Mercy Kansas City Hospital, they sent an airplane and flew the family to Kansas City on Nov. 18 for Porter to go to the hospital.

Arriving around 7:30 p.m., Porter underwent a lumbar puncture to do what’s called a B cell and T cell differentiation, which helps the doctor’s lock down on what’s going on with her symptoms.
Her treatment plan consisted of a rituximab infusion and then ACTH steroid injections twice a day. Once the family finally had an official diagnosis, Breann said starting a treatment plan gave her some relief.

“I remember sitting there thinking ‘I don’t know how we’re going to do this’ but at the same point, I was like, ‘You know what? At least if we have an answer, we can start a treatment plan and we know what we’re in for,’ but sitting here having no answers, I feel like it’s almost worse than getting an answer that we don’t want,” Breann said.
Each day at Children’s Mercy Kansas City Hospital, Breann said she saw Porter’s condition deteriorate more and more. At one point, she couldn’t sit up unassisted for long periods of time and she couldn’t walk.
Because of her tremors, Porter couldn’t hold silverware by herself. Eventually, her tremors became full body.

“Just watching that and watching the doctors scramble to try to find answers to stop this, it was just as hard on them as it was on us to not find an answer to help Porter,” Breann said.
By Nov. 22, Porter was able to stand up again for short periods of time. Her tremors and rapid eye movements also stopped.
Even though the family was ready to be discharged from the hospital, they had to face another hurdle. Their insurance provider denied covering the visit due to the vials used throughout Porter’s treatment, which costs $36,000 each. Over 10 of them were used for Porter.

Nonetheless, Breann was ready to push back. Working for a large healthcare company, Breann’s job is to fight insurance carriers to make sure they pay for their providers. After speaking with the direct appeals nurse, she helped get the denial overturned, allowing the family to go home the day before Thanksgiving.

Despite calling herself a private person, due to her large family wanting to hear about her daughter, Breann turned to social media as a way to update her loved ones.
She first started with creating a Facebook page, called “Porter’s Posse,” as a way to share news regarding Porter’s condition. Currently, the page has over 1,300 members.
Breann also created a TikTok account, @portersjourney, to spread awareness on OMAS, which has over 69,000 followers.
In many of her videos, Breann Gibson heard from other parents and grandparents who also have children struggling with similar symptoms.

“It’s nice to know that people care and are curious about a disease that is so rare that they want to be educated about it, they want to learn,” Breann Gibson said.
As the family hoped to reach the end of her treatment, Porter had a relapse over a year later. On Nov. 12, Breann was helping Porter put her shoe on, and her foot was shaking a bit.
Breann kept a closer eye on Porter, feeling unsure if it was just her mind playing tricks on her. By the next day, Porter’s tremors grew worse.

Calling Children’s Mercy Kansas City Hospital again first thing in the morning, they made an appointment for Nov. 15, with the doctors later confirming it was another relapse.
The doctor initially didn’t want to use ACTH steroid injections again, as it could cause a hormone imbalance for Porter. The medical team first tried giving Porter a high dose of Methylprednisolone for five days, as well as another rituximab infusion

Since she wasn’t getting better, the medical team restarted the ACTH injections on Nov. 18, not seeing much improvement until the evening of Nov. 21. After going home on Nov. 22, Breann said Porter was still dealing with fine motor tremors.

“Her symptoms still aren’t fully gone, whereas last year, they were by the time we got home, the symptoms had really just subsided, there was no sign of it,” Breann said. “And now she still has them even almost a month later.”
Outside of receiving kind comments and support online, the family’s community has also stepped up in helping out.
Erica Burris, who runs the Sweet Treats Wednesday program at Scranton United Methodist Church, utilized the annual Christmas in Scranton event as a way to raise money for the family’s gas and lodging needs.

“They just never have asked for anything,” Burris said. “The fact of living in the hospitals and transporting and living off of one income and having other children, and you’re doing it for almost a whole year and not asking for anything, any type of help whatsoever. Sometimes, it’s just better for us to notice that they’re not asking for it, but let’s just give them something to give them that extra faith.”
Regardless of her diagnosis, Breann said Porter is handling the journey better than most adults she would know.

“She has really been just resilient,” Breann said. “I always felt like I needed to be strong for her, but there were so many times that it was like she just had her own strength and she was fine.”
Even on days when Porter didn’t want to be at the hospital, Breann said she tries to make the best of it. Since frequenting Children’s Mercy, Breann said Porter has become “a fan favorite” among the nurses, with many of them making sure to visit her.

While the family visits Anderson Shoe Store, where Burris works, she says Porter still runs inside the building and says “Look at my shoes.”

“She is so full of life, that’s the crazy thing about it. There’s something about her in her eyes, that smile. . .it’s contagious,” Burris said. “For what she’s gone through, she’s such a sweet spirit.”
As of now, Breann said Porter is doing well and happy to be back in school. Although Breann and Bryan contemplated taking her out of school due to her lack of immune system, they knew it would crush Porter’s spirits.

“We’ve chosen, with the direction of her doctors as well, to just make sure that she wears a mask when she’s in a crowded space and all the things that any typical immunocompromised child would have to do,” Breann said. “But really, for the most part, she’s doing really well.”
For parents finding themselves in similar situations, Breann advises them to continue advocating for themselves, regardless it’s against a physician or insurance provider.

“I just want people to know that just because insurance says no or a doctor says that this is what it is and your instinct is telling you that it’s wrong,  there’s nothing wrong with getting a second opinion,” Breann said. “There’s nothing wrong with pushing back a little bit with asking questions and demanding answers from your physicians, and same with insurance. Just because they say ‘denied’ doesn’t mean that’s the end of the battle. You just keep pushing and you push and typically at some point, they’re going to break and it’s going to work out.”