At the age of 12, most kids are participating in sports, learning an instrument or spending hours with friends.
Now, imagine as a 12-year-old, you couldn’t be involved with something for more than an hour, feeling sick and exhausted 24/7.
Unfortunately, that is the day-to-day reality for 12-year-old Riverside resident, Lizzie Mooney.
Lizzie is one of 1 million Americans afflicted by myalgic encephalomyelitis, or ME — more commonly known as chronic fatigue syndrome. For 25 percent of people with ME, the effects qualify them as homebound — including Lizzie.
To further continue spreading awareness of ME, Mooney is hosting a film screening of Unrest, a film about ME, at 6:30 p.m. on Wednesday, Nov. 29 at Riverside-Brookfield High School, 160 Ridgewood Road, Riverside.
Unrest is a 2017 Sundance-award-winning film by Jennifer Brea, a former Harvard University doctoral candidate who was stricken with ME in 2011.
Lizzie’s mother, Amy Mooney, said her daughter began showing symptoms at age 9. However, while Lizzie’s illness took a while to progress, Mooney and her husband, Don, did not hear a diagnosis of ME right away.
“It was kind of a long, drawn-out process of ruling out many other conditions, so it’s a condition that is primarily symptomatic,” Mooney said. “It’s just ruling out other conditions and then just checking off the symptoms of typical progression of this disease.”
Symptoms of ME include debilitating pain, sleep and cognitive dysfunction, sensory sensitivity and severe immune dysfunction. There are no blood labs that can diagnose ME; rather, patients are found to have regular biological abnormalities in research settings.
“[Lizzie] goes through roller coaster rides of the illness,” Mooney said.
For the last three years, Lizzie has only been able to play with her siblings, Ben, 14, and Cece, 7, for no more than an hour at a time. She has also been out of school since the first day of her illness, so a tutor from District 96 comes to Lizzie’s home and teaches as long as Lizzie can stand it.
“At this point, that’s all she can handle with cognitive activity, because the illness not only has physical demands that exhaust her [but] it’s physical and emotional — anything that takes exertion that will take away from her ability to really think and process,” Mooney said.
Once a year, Lizzie goes to California for specialized treatments. The rest of the year, she does phone conferences and has a local doctor who follows up with the California specialists.
“We’ve had to make our own treatment plan because it’s out of the box,” Mooney said, explaining the illness is not curable but rather managed frequently. “It’s a lifelong condition, but it’s managed so she can stay within the window of functioning.”
Since Lizzie’s diagnosis, Mooney has campaigned for funding and research for ME. She is part of a grassroots online support group and has participated in protests for the medical community to recognize ME.
Mooney even testified last January with State Rep. Michael Zalewski (D-Riverside) before the Health and Healthcare Disparities Committee of the Illinois House of Representatives to support a resolution formally recognizing ME.
“My involvement is to get the medical community and the greater population to know about this, because there are millions of people with this condition that are just not recognized and many people are kind of fighting on their own figuring out what’s wrong with them,” she said.
Following the film screening at RBHS, Mooney said she hopes to have a short question-and-answer period with audience members. She wants community members come to the event to understand that ME can strike any family at any time.
“Primarily, my focus is that so many of our friends and family in the area know my daughter and know our family and they don’t understand what her illness is all about, and I’m just wanting to give back to them by saying ‘This is a picture of what our day-to-day-life looks like with this illness,'” she said.
Tickets to the screening are free and available by clicking here.