YORK — Most nights, Rooney Rimmer struggles to sleep due to symptoms of a rare, incurable autoimmune disease that attacks healthy cells and causes muscle weakness, skin rashes, fatigue and anxiety.
But for a week earlier this month, Rooney’s insomnia was more about excitement and pure joy.
Rooney, a 9-year-old York County resident, traveled to New York City for six days as a Make-A-Wish recipient, where the “Wicked” superfan saw a live Broadway performance of the musical. She also had a surprise meeting with actress Kristin Chenoweth, who originated the central role of Glinda on stage.
“It was just crazy when I saw her,” Rooney said. “My mind was over the moon. She hugged me and my hands were cold so she gave me her hand warmers. She was so amazing and nice.”
The Make-A-Wish Foundation pays for children with a critical illness — not necessarily terminal conditions — to enjoy customized experiences with loved ones. Rooney flew to New York in early December with her parents, Jeff and Megan Rimmer, and two of her four older siblings.
Trip highlights included venturing backstage at “Wicked,” ice skating at Rockefeller Center and going to Top of the Rock, shopping for Labubu collectible toys and Legos, swimming in a sprinkle pool at the Museum of Ice Cream, and visiting Times Square and Fifth Avenue.
“It was very pretty and very cold,” Rooney said of the city. “I loved it so much.”
Chenoweth snuck up beside Rooney at a national Build-A-Bear event at Rockefeller Center, where Rooney was the featured “wish kid” for sponsor Teleflora and did interviews with multiple media outlets.
Together, the two made stuffed bears and taped a segment for “Access Hollywood.” The actress also gave her young fan a “Wicked”-themed makeup set from herself and Ariana Grande, who has starred as Glinda in recent movies.
“This program gave her something so rare,” Jeff Rimmer said. “Space to forget. Space to feel light and celebrated for who she is, not what she manages. Watching Rooney move through the week without fear in the background was emotional in a way that’s hard to describe.”
Rooney has juvenile dermatomyositis, or JDM, an immune system malfunction that can lead to life-threatening complications with the lungs, heart and other organs. Some kids grow so weak that they can’t walk or even lift their arms.
Doctors believe JDM is caused by a mix of genetic predisposition and environmental factors such as viral infections. Managing the illness requires a strict medication regimen and frequent doctors’ appointments, blood tests and scans.
While treatments currently have Rooney’s disease under control, she has a form of JDM that is less likely to ever go into full remission. She likely will need medication and careful monitoring of her heart and lungs throughout her life.
A third-grader, Rooney loves drawing, dancing, acting, playing with her dogs and cats, experimenting with makeup, listening to 1990s grunge music and sharing her thoughts and journey on a podcast with her dad, called “rooneytune” (linktr.ee/rooneytune).
On a daily basis, however, Rooney deals with JDM symptoms — plus the fear that her condition will worsen. She limits her time in sunlight, which can trigger muscle pain and rashes, and tries to avoid cold and flu viruses that could overwhelm her weakened immune system.
Rooney’s parents have done their best to help her feel normal, not like a “sick kid,” although she recently had to switch to online school after several years at Seaford Elementary. They describe her as funny, caring, polite, inquisitive, resilient and wise beyond her years.
“I told Rooney that everyone has something they have to deal with, and this is hers,” Megan Rimmer said. “She has a great attitude about it all, but it’s a lot. She’s always hyper-aware of her body, which can cause her to be a bit of a worrier.”
The Rimmers first noticed Rooney’s flushed cheeks when she was 3 years old, followed by her bright red fingertips and what looked like scarring on her knuckles. Her pediatrician thought she had eczema, a common inflammatory skin condition.
Once Rooney was about 6, kids at school had started to comment on her regular face rashes. A local dermatologist took one look and suspected JDM, which she had read about in textbooks but never seen in person. In October 2023, a skin biopsy confirmed the hunch.
Further testing revealed core muscle damage that helped explain Rooney’s small stature and slower speed on the athletic field compared to other children her age. She quickly started treatments that at times felt so scary she became physically ill.
JDM is known in medical circles as an “orphan disease” — one so rare that drug companies have little to no financial incentive to develop therapies. Rooney takes twice-daily doses of CellCept, a chemotherapy-like drug that aims to suppress her overactive immune system.
Every six weeks, Rooney also needs 10- to 12-hour infusions of immune-boosting antibodies, or proteins, from healthy donors. She initially had to travel to Duke University Hospital, where she received specialty care, but now has treatments at home with a nurse who has become a trusted friend. Each time, she develops severe migraines for several days.
“So much of her life requires strength and awareness that most kids never have to carry,” Jeff Rimmer said. “As her parent, you spend a lot of time trying to protect her sense of normal, even when nothing about the situation feels normal.”
The Rimmers, also parents to Taylor, 22; Carleigh, 20; Jude, 16; and Lennon, 14; jumped at the chance for Rooney to bask in red-carpet treatment from Make-A-Wish.
“For me, it meant seeing my child fully in the moment, joyful and unburdened,” Jeff Rimmer noted. “It doesn’t take anything away from her reality, but it gives her something powerful to carry back with her.”
Or, as Rooney put it, “I was just so happy and touched. It was nice to have a week not to think about JDM.” Chenoweth taking the time to see her, she added, “made me feel really special and I will never forget it.”
As for the future, Rooney talks about possibly becoming a pediatric rheumatologist to help other children with autoimmune diseases — or, in typical 9-year-old fashion, just being “famous.” Her week in NYC was a taste of the latter.
“This experience meant everything to our family,” Megan Rimmer said. “Rooney really felt special every single day of her wish.”
Alison Johnson, [email protected]