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Standish-Ericsson boy battles rare polio-like illness

Posted on 18 November 2018 by calvin

Four-year-old Orville’s right arm is paralyzed and both legs affected by Acute Flaccid Myelitis; benefit set Dec. 16

By TESHA M. CHRISTENSEN
Pressing on after a life-changing event takes a village, and Standish-Ericsson residents Elaine and Michael Young are so grateful for theirs.

In the aftermath of their young son’s paralysis and hospitalization, the family has been amazed at how supportive and giving people have been, despite the family only having lived in Minnesota for a few years.

“Thanks to everyone for everything,” stated Elaine. “Having people drop off meals and stuff has been so helpful.”

Suddenly paralyzed
The summer began like any other, and the Youngs kept busy with friends and outings.

On July 4, 2018, all four members in the family were sick with a cold, but Elaine didn’t think much of it. Six-year-old Audrey seemed the sickest, and three-year-old

Orville just had a runny nose and a cough. Then on Tues., July 10, Orville started running a fever of 101 degrees. His mom wondered if it was a urinary tract infection and began treating it with over-the-counter medications. When it still hadn’t gone away by Friday, she began debating whether or not to bring him in before she flew out of town for a visit with family in Northern California that weekend. They had spent the morning playing at the neighbors, and Orville went out for the mail when they got home.

That’s when Elaine noticed that his right hand was just hanging there.

“Buddy, can you raise your arm?” she asked him.

He couldn’t.

Elaine moved fast, and within minutes they were in the car, heading to the only hospital the recent transplant to Minnesota knew in the area, the Masonic Children’s Hospital.

Elaine says she already knew what this was—Acute Flaccid Myelitis (AFM), a rare, polio-like condition caused when enteroviruses invade the nervous system and target the spinal cord.

She had been pregnant with Orville in 2014 when there were several cases in California that hit the news, and she’d read up on it.

Photo left: Standish-Ericsson resident Orville Young refers to his paralyzed right arm as his “wonky arm.” Orville has therapy appointments at Gillette Children Specialty Healthcare in St. Paul four times a week, and is likely to have surgery in January to move a nerve to help stimulate movement in his paralyzed arm. A youth art show benefit to pay for medical bills is being planned for Dec. 16, 3-6 p.m., at the Public Functionary, 1400 12th Ave. NE, Minneapolis. (Photo by Tesha M. Christensen)

By July 13, the doctors also suspected AFM because of the inflammation in Orville’s spinal cord that showed up on an MRI, although it wasn’t officially confirmed by the CDC until November.

None of the treatments they tried in the hospital worked.

“They sent us home with a kid who couldn’t walk,” recalled Elaine.

Orville and AFM
Back home, Orville’s family noticed the stark difference between what he used to be able to do and what he could do now.

His right arm wasn’t working. Everything but the hand was paralyzed.

His right leg was extremely weak. He tripped and fell a lot. His right trunk muscles were weak so getting up was hard.

Because Orville’s entire spine had been inflamed, both of his arms and legs were weak at first, but some movement came back within the first two weeks as the inflammation went down.

Later, they realized that his left leg had also been affected, and he can’t stand on his tiptoes or heels. He often catches his foot and trips when he’s moving fast.

Four months out, his stamina is still low, and he tires quickly.

Photo right: At home, mother Elaine (left) and father Michael hook four-year-old Orville Young up to an electrical stimulator while he plays video games. He gets the stimulation twice a day for 15 minutes at a time. (Photo by Tesha M. Christensen)

Orville, who turned four a month after he got sick, had been pretty independent. Now he has trouble dressing or feeding himself. He is right-handed, so opening doors is difficult. Pulling up his pants is really hard.

Orville’s right bicep and deltoid are completely flaccid and have not contracted even once since he got sick. Elaine has begun noticing that his right arm is smaller than the other.

His right hip remains weak. If he jumps off something and lands a certain way, it’s likely that his right leg will buckle.

‘It’s just a cold’ has new meaning
Life after Orville’s illness has taken on a new routine. They juggle Orville’s various appointments with research and have been grateful for meals and babysitting from friends and family.

“I have a 9-5 job spending time on the phone,” acknowledged Elaine, who is a stay-at-home mom who homeschools their children. “I keep my ringer on now.”
She’s also “constantly paranoid,” she admitted.

“The term, ‘It’s just a cold’ means a whole lot more to me now,” agreed Michael.

Orville refers to his right arm as his “wonky arm.” His parents said he’s pretty good about maintaining a positive spirit about his many appointments although he does get tired of it all sometimes.

Orville goes to therapy at Gillette Children Specialty Healthcare in St. Paul four times a week. He rides a functional electrical stimulation bike and uses a robotic exoskeleton arm. He’s started therapy in a pool and picked out a fun swim cap and bathrobe to use. They play games and try different things, but there isn’t a set protocol for this and no guarantee that it will help, according to Elaine.

At home, he is hooked up to an electrical stimulator twice a day for 15 minutes at a time.

He’s about to get a brace on his left leg to use for long walks to help keep him from falling so much.

While they work with occupational and physical therapists, Elaine and Michael are also meeting with specialists who have successfully treated this type of paralysis with a nerve transfer. For instance, they take a coughing muscle and move it to the arm and then work to rewire the brain. The Youngs anticipate a surgery in January at either Philadelphia Shriners or in California. It will take 6-12 months after surgery to know how effective it is.

“The hope is that he can regain function,” remarked Elaine. “But even then he’ll probably never regain 100 percent.”

Photo left: Orville Young, age four, goes to therapy at Gillette Children Specialty Healthcare in St. Paul four times a week. “The hope is that he can regain function,” remarked his mother, Elaine. “But even then he’ll probably never regain 100 percent.” (Photo submitted by Elaine E. Eller Young)

When paralysis like this happens at such a young age, the arm doesn’t grow as it should, and some of the kids affected have undergone amputations.

Elaine said she was glad Orville’s doctor was straightforward with them and didn’t sugarcoat things. “But I also decided he was going to be wrong. I was going to do everything in my power to make him wrong,” she stated.

A fine line to walk
Michael and Elaine are happy that Orville has a lot of body positivity, and tells others, “I’m a buff guy.” They started nicknaming him “Lefty” to pay attention to his strong left arm, but Orville batted back, “No, call me Righty.”

The couple acknowledges that they have a fine line to walk between pushing Orville to regain function and accepting him for who he is now and letting him just be a kid.

“We can’t forget the other parts of him,” said Michael, who is a special educator at Groves Academy. “I want him to be body positive and pro-disability.”
They are glad that they will be able to tap into a larger network of people, including polio survivors, to make sure Orville has a community of people who understand the challenges he faces.

Michael doesn’t think his son understands yet how permanent the paralysis is.

One of the hardest things for him and Elaine was a few weeks out from Orville’s hospitalization when they realized how little control they have over this illness. “We can’t protect him from it,” Michael stated. “We can’t promise him that we can make it better.”

Elaine has found support in a Facebook group populated by families from around the world who are dealing with this polio-like illness.

“There are cases from 30 years ago,” Elaine pointed out. “This isn’t a new thing. The new thing is the numbers. It’s happening in larger amounts.”

To help spread awareness and work on solutions, the Youngs and other Minnesota families met with Senator Amy Klobuchar and staff from the Minnesota Department of Health in October.

About AFM
Overall, the Youngs feel lucky that Orville’s case was mild as it has been. Others can’t walk.

Most people affected by AFM are children under the age of 10. While the polio vaccine guards against poliovirus (a type of enterovirus), there is no vaccine for the strain of enterovirus that Orville contracted. Symptoms may include facial-muscle weakness, issues moving the eyes or droopy eyelids, issues in swallowing, or slurred speech. It can also lead to paralysis, respiratory issues, and death.

There have been two cases of AFM in Minnesota in July, and another seven from the end of September/beginning of October. The kids have nothing in common, did not come in contact with each other, and come from all over the state, observed Elaine.

Parents are advised to keep a watchful eye for AFM symptoms and bring a child to the doctor immediately if they experience any limb weakness, facial drooping, and trouble swallowing or speaking.

More at www.myelitis.org.

Benefit for Orville planned
A benefit youth art show for Orville the Awesome is being planned for Sun., Dec. 16, 3-6pm at the Public Functionary, 1400 12th Ave. NE, Minneapolis. (https://theawesomeartshow.wixsite.com/orvilletheawesome)

This will be a celebration of art and community with live bluegrass music from No Man’s String Band, face painting from homeschooler Jesica Gibson of Painted Imagination, and a silent auction and raffle featuring art, handmade goods, tickets, passes, and gift baskets.

Admission is a suggested $5. Proceeds will go towards Orville’s medical bills.

The event is being organized by South Minneapolis resident Jenna Bergendahl, who is part of the homeschool group, Little Urban Explorers, that the Youngs are also members of.

“I think part of being in community with each other is helping each other, and I love the idea of the homeschool community coming together for each other in this way,” stated Bergendahl.

She has been delighted by the response of homeschoolers and community members who have donated items to be in the silent auction and raffle, as well as those who have opted to be part of the youth art show.

In addition to individual submissions, courageous heARTS at 2235 E. 38th St. is involved.

“I hope this will be a powerful experience for the kids—not only to have their art treated with the kind of respect usually reserved for adult, professional artists—but also to know that they made a donation to a local family with their submission and to see a little bit of that impact at the show,” remarked Bergendahl.

“I know many parents are looking for ways to engage their kids in the community, and helping them see themselves as people who contribute, share, and lend what they can to others. I think that this event will be a very hands-on, tangible way for young people to see what’s possible when we come together for each other. It’s also going to be a lot of fun!”

Photo right: A Go Fund Me page has also been set up for the family to help purchase a child-size functional electrical stimulation bike for Orville to use at home. Right now he’s just able to ride the one at Gillette once a week. Learn more at www.gofundme.com/fes-bike-for-orville. As of Messenger press time they had raised $15,147. (Photo by Elaine E. Eller Young)

 

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