Wish Upon A Teen executive director Nancy Sovran talks about the Design My Room program. Robin Buckson / The Detroit News
The Birmingham-based nonprofit organizes spa days, proms and redecorates hospital rooms nationwide for teens
Marissa Monte was watching the Netflix sci-fi “Stranger Things” when four strangers swooped in her room, armed with bedding, posters and Wonder Woman wall decals.
The crew wasn’t exactly four strangers, but volunteers and ambassadors with the nonprofit Wish Upon a Teen, which decorates hospital rooms for patients age 12-20. Sometimes, organizers will make age exceptions, like they did for Monte, who’s 22 and was diagnosed with Hodgkin’s lymphoma in 2015. For the next month, the Livonia resident will be a resident of the University of Michigan C.S. Mott Children’s Hospital, where she’s receiving a stem cell transplant.
On Monday morning, Monte happily shuffled to a chair with her IV chemotherapy, so Dr Darrius of WJLB-FM could pimp out her bed.
“I know Mott provides the 2,000 threads. We got you 15,000-thread sheets,” he jokes.
Meanwhile, TV20 Detroit host Jessica Lundy plastered a Harley Quinn poster by the window, as University of Michigan students stuck Wonder Woman’s yellow W on the wall.
Less than a half-hour later, Monte sat back on her bed, admiring the decorations of her favorite superhero.
“I love my new room,” she says. “Wonder Woman is a very powerful role model, and she’s brave and that’s how I have to be going through all of this. Be brave and strong.”
Michelle Soto, 47, started the Birmingham-based Wish Upon a Teen in 2011. Before retiring as a child life specialist, Soto worked with the Mattel Children’s Hospital UCLA pediatric liver transplant team. She noticed kids got special attention from organizations and visitors, while teens were often left out. And yet, teens needed the attention more, she says.
“A severe illness that affects a teenager is much more horrific than it would be for a 4-year-old, because they’re young adults and they already have their life planned out,” she says. “They’re in high school, they know which college they want to go to, they have girlfriends and boyfriends, and they play sports. When a severe illness or injury affects an adolescent, it can really take an extreme toll on them.”
After having three children and moving to Michigan, she decided to form a nonprofit that normalized the hospital environment for teens and offered social opportunities. She started with spa days at local salons, followed by proms held for teens too sick to attend their own.
“You think of a spa day, and you’re like, ‘What’s the big deal? It’s just a bunch of girls sitting together and getting a manicure.’ Well, it’s so much more than that because these kids don’t socialize,” she says. “They live in bubbles.”
As a teen, she’d shop at the mall and gossip about boys with her friends. The outings were “social therapy.”
“These kids cannot do that,” she says, “because going out in public, (catching) a common cold could send them back to the hospital, or worse, it could kill them.”
So she brought the socializing to them.
“Maybe they’re not at the mall talking about boys, but they’re talking about procedures and what they’ve gone through. But don’t get me wrong, they’re still teenage girls,” Soto says, laughing. “We had a spa day, and they were talking about a couple of the cute resident doctors.”
Soto began with six hospitals in Michigan. The nonprofit now partners with 58 institutes across the country. The signature program, Design My Room, launched two years ago. Last year, over 100 volunteers redesigned 315 rooms, which is double from the year before. Just this month, executive director Nancy Sovran has decorated 25.
The Southfield resident knows how a makeover can spark joy. Her daughter, Hope, had her room decorated in a “Glee” TV show theme when she received a bone marrow transplant at Mott in 2012.
“Everyday I go to work, I don’t feel like I’m going to work because I’m doing something for families who’ve been through the same thing we’ve been through,” says Sovran, 56.
Patients fill out a form with their requests, and Sovran assures no two rooms are alike. They’ve done Paris, Minnie Mouse and Michael Jackson themes. Her favorites involve sports, like the Chicago Cubs room for which she secured a Ben Zobrist autograph.
“I try to go that one step further to make it really special for them,” she says.
Lighting up spirits
Kaitlyn Dill walked around the seventh floor as the Wish Upon a Teen team strung lights and set out frames with inspirational quotes.
The 16-year-old was diagnosed with leukemia at age 5. After an eight-year remission, the cancer came back.
Tired of staring at the same walls the past three weeks, Kerri Dill says her daughter asked her dad to “bring her room from home” in Freeland. Even Kerri needed a change of scene.
“I rearranged the furniture over there,” she says, pointing to the swapped couch and chair. “It felt like a whole new room.”
When Wish Upon a Teen finished, it truly was a new room.
Pattering across the threshold, you couldn’t see the smile behind Dill’s face mask, but her eyes said it all.
“I like it!” she exclaims.
“You like it, but I’m going to show you why you’re going to love it,” says Dr Darrius, grabbing a remote to flicker the lights. “Party, party, party, party. Heyyyyy, go Kaitlyn!”
As everyone burst out laughing, her mother, watching from the corner, struggled to find words.
“These kids go through so much,” she says, tearing up, “and to put a smile on their face, just one smile. It’s awesome.”
Amy Monte, the mother of Marissa, a few rooms down, had a similar reaction.
“People forget there’s young adults and teenagers up here,” she says. “… A lot of charities tend to do stuff for the younger kids, so it’s nice to see that people realize there’s a need for teens.”
There are no studies on the impact of a room redesign, but from what recreational therapist Molly Kofflin has witnessed, it boosts morale.
“A lot of our teens will stay in their rooms, and I can offer them activities and crafts and invite them to game night, but usually they decline,” says Kofflin, who works with Mott’s Child and Family Life team. “Usually when their room is decorated, it just kind of opens that door. They’re proud of their room. They want to tell people about it. It’s a conversation piece, and then I can get them out engaging with other teens.”
Dr. Rajen Mody, a Mott pediatric oncologist, says the makeovers make a “tremendous” difference.
“A teenager’s day lights up when they see visitors and get special attention,” he says. “It sometimes helps them continue with treatment and keep a positive spirit.”
He notes that childhood and teen cancer is “extremely uncommon” — with about 16,000 new cases in the U.S. each year — but when it strikes, teens tend to suffer psychologically.
“Children 5-10 years old are not psychology associating cancer with death, loss of hair and they don’t respond to change in body of appearance in a negative way as much as teens do, especially young girls,” Mody says. “Because of that, (teens) tend to have body image issues, self-doubt, depression, anxiety and many times this leads to non-adherence to the therapy.”
The American Cancer Society reports the most common types of cancer in teens ages 15-19 include leukemia, brain and spinal cord tumors and lymphoma. The cancer mortality rate for those younger than 19 has declined by more than half from 1975-2010, according to the National Cancer Institute, but Mody says more research and campaigns like this week’s Teen Cancer Awareness Week is needed.
“The biology of the cancers that teengagers have is different from any other pediatric cancer and that requires special protocols and treatment,” he says.
Making wishes come true
Wish Upon a Teen has celebrity brand ambassadors nationwide, including “Dexter” star Julie Benz and “General Hospital” star Haley Pullos. Dr Darrius, whose real name is Darrius Summers II, represents Metro Detroit. His first patient was a high school student coincidentally named Darrius, who suffered a near-drowning incident. Summers brightened the room with Detroit Lions decor.
“The doctor said he wasn’t really smiling or talking for two weeks,” Summers says, “and he was super excited to see his favorite sports team. Just to see his face, it was priceless.”
Lundy of TV20 emcees local fundraisers and redesigned her first rooms Monday.
“There’s no way to really get a grasp on everything it does for (teens) emotionally without seeing their facial expressions,” Lundy says. “... It’s nice to make them feel like they’re at home or even a hotel.”
Last year, Wish Upon a Teen student groups formed at UM and Michigan State University, with the goal of expanding to more colleges. UM co-presidents Tess Breuch and Nick Michetti, both 21, have already designed 50 rooms.
While volunteers don’t always see smiles — “Sometimes (the teens) are so sick, and they want to be happy, but they just can’t,” Sovran says — Michetti argues they always “get something.”
“Like a laugh,” he says, “or there’s one thing you bring out of the bag that brings a smile to their face.”
Wish Upon a Teen
To volunteer or donate, contact Nancy Sovran at (248) 792-2938 or firstname.lastname@example.org