Twin Cities mom's full-time job: Finding help for son with rare neurological illness

Elaine Young and her 4-year-old son Orville
Elaine Young and her 4-year-old son Orville outside their south Minneapolis home. Acute flaccid myelitis (AFM) has left Orville unable to move his right arm.
Nina Moini | MPR News

At first glance it's hard to tell that something awful and unexpected happened to 4-year-old Orville Young this past summer, but acute flaccid myelitis has left the Minneapolis boy unable to move his right arm.

His diagnosis of AFM came a few months before October's nationwide outbreak of AFM, during which seven more Minnesota children were diagnosed with the rare illness that can leave kids paralyzed.

According to the Centers for Disease Control and Prevention, AFM is a rare but serious condition. It affects the nervous system, specifically the area of the spinal cord called gray matter, which causes the muscles and reflexes in the body to become weak.

There has been an uptick in cases every two years since 2014, when the CDC first began tracking the condition.

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Elaine Young recalled that, like many other cases of AFM, Orville's symptoms first appeared to be nothing more than a common cold.

"You know, just a mild cough and a runny nose," she said. "In July, around the Fourth of July, we were all sick — the whole neighborhood was sick."

Young said that eight days after Orville got sick, she took her son to the hospital when he developed a fever and his arm suddenly went limp. She said doctors had a hard time diagnosing what appeared to be a mysterious illness.

"First they wanted to send us home and told me to come back if it got worse, and they expected maybe he was just in pain and didn't want to move it," she recalled. "But he had no pain, and he just could not move his arm."

He was also having trouble moving his legs. After several tests, Young said, doctors told the family Orville had AFM.

The illness has been called similar to polio, but AFM doesn't have a vaccine and the cause is unknown. Young said doctors gave Orville a treatment of steroids, and he went home after five days in the hospital.

Since then, the family's lives have been forever changed.

"I like to joke that I have a 9-to-5 job just making phone calls at this point," Elaine Young said. "It's been really hard. He plateaued, and the progression of paralysis had stopped, and they basically said, 'Good luck, figure it out, get some outpatient therapy — but most likely he'll never use his arm again."

Young said she feels for parents dealing with the aftermath of AFM who aren't able to be a stay-at-home caregiver like her. While her husband is at work, she said therapy appointments take up most of her days.

"It's just hours and hours of driving everywhere, and finding the time and a schedule — and they don't have a lot of openings, so finding a schedule that's even consistent is hard," she said. "I can't imagine what it's like for a kid that's school-aged."

With intensive physical therapy, Orville has gained function back in his legs — but according to his mom, his progress seemed to be punished by the health care system.

"They have a list of what qualifies as a disability — and under neuromuscular disorders, it says if you have hemiplegia or paralysis of one limb, it has to impact more than one," she said. "So his arm being paralyzed, he would also need to have trouble standing in order to qualify as having a disability. He has no disability, according to the government."

Orville Young's July diagnosis came before seven more confirmed cases that occurred in October in Minnesota. At last check, 22 states have seen an outbreak of cases this year.

Kris Ehresmann, who serves as infectious disease director for the Minnesota Department of Health, said Minnesota expects zero or one case of AFM in a typical year. In 2014, there were three, but she notes there was no uptick of cases in Minnesota 2016.

"What we did do this year is when we saw the increases in cases, we put out what's referred to as a health alert, which goes to health care providers across the state," she said. "Our health alert was intended to bring this to their attention and to say, 'If you see a child with acute onset of limb weakness...' "

"Given the attention and the energy that's going into this, I think a lot of providers are now aware. As we anticipate 2020, that's certainly something we can do proactively."

Elaine Young said she is concerned that AFM will re-emerge in 2020, and doctors won't be prepared.

"It probably will die down next year, and then come back in 2020, and they'll say, 'Oh, we didn't expect this,' and we'll have no clue what to do again, until the numbers are so high that they can't look away anymore," she said. "But how many kids have to be paralyzed for you to keep looking away? It's insane."

But the CDC and state health officials say they are doing all they can to monitor a condition about which very little is known.

The Council of State and Territorial Epidemiologists coordinates between state and federal agencies to ensure a uniform protocol for dealing with various infectious diseases.

Executive director Dr. Jeff Engel said that while more information about AFM is available than before, there still is very little known about the cause and why some children develop AFM and others do not.

"It appears to be behaving like a viral infection, which is our most likely guess at this point in time. And the future is unknown, and quite honestly, it's scary," Engel said.

Engel pointed out AFM is still extremely rare. The CDC estimates that fewer than 1 to 2 in a million children in the United States will get AFM each year.

Elaine Young said she hopes science can catch up with AFM and save more children from challenges like her son is facing.

"It's tiring. You have to fight everyone just to get your child the care that he needs," she said. "He's a little boy with a paralyzed arm — he needs help, and it shouldn't be that hard, it shouldn't be this difficult to get care for your kids."

The Young family is participating in studies being conducted across the country to find the cause of AFM.