Living with the polio-like condition AFM

CHICAGO – The diagnosis was in, but Jessica Kulakowski still didn’t have the answers, so she started scouring the internet to find out why her son’s cold had left his right arm virtually lifeless.

Online, she found case studies but nothing definitive about why her then 1-year-old boy, Chase, contracted the rare polio-like condition known as acute flaccid myelitis, or AFM. The condition, in the news as a spate of new cases have made headlines in Illinois and beyond, affects mostly children and causes muscles to atrophy, leaving some bedridden with paralysis and unable to breathe on their own. Medical experts have in some cases linked the syndrome to an enterovirus, which causes the common cold and other respiratory illnesses, but it’s not believed to be contagious.

Two years after her son’s diagnosis, questions linger for the Northwest Indiana mom who worries anew each time the toddler complains of an ache or has the sniffles: Could this David Kulakowski, 38, and Jessica Kulakowski, 31, watch their son Chase, 3, play in their Dyer, Ind., home on Oct. 15.

be another complication related to AFM?

“It’s like living in paranoia because there’s just no answer to anything,” Kulakowski said.

Nationwide, the rare condition has gotten more attention after federal health officials reported an increase in cases in recent weeks, leaving parents like Kulakowski perplexed: How could such a complicated medical journey begin with their little one’s runny nose?

Now 3 years old, Chase races his toy dump trucks through the family’s Dyer, Ind. home, a stark difference to when the paralysis of his right arm caused him

to lose his balance. His parents remember the agony of watching him fall as he tried to walk. But a nerve transfer – a procedure that restored movement to his shoulder and elbow – and continued physical therapy has enabled him to use his right arm again, though he continues to build up its strength. In therapy, he’s using a bat and knocking things down to strengthen his arm.

“I’m not sure he’s ever going to fully recover from it,” Kulakowski said. “I don’t see it as a realistic outcome. I think he’s always going to know he’s different.”