- Associated Press - Tuesday, June 10, 2014

DETROIT (AP) - Emma Webb sorts through a rack loaded with dresses in a Bloomfield Hills office space.

She fingers the details on purple satin and red chiffon, eyeing gowns that would make many a teenage girl weak at the knees - perhaps the boys as well.

The 16-year-old brain cancer survivor from Harrison Township closes a door to try on a glittery mauve tiered dress with ruffles and a satin ribbon. She smiles broadly as she steps out.

“Did you see her face?” says Michelle Soto, founder and president of Wish Upon a Teen, a nonprofit that provides support for adolescents with chronic or life-threatening illnesses as well as teens with autism and developmental disabilities. “That’s why I do this.

“Right now, there’s nothing for her to worry about. There are no IVs, no chemo, nothing matters but finding the dress.”

Wish Upon a Teen is now 3 years old, and it’s about to host its second prom for sick kids, according to the Detroit Free Press ( https://on.freep.com/ThN4GC ). This year’s event is planned for June 14 at the Hotel St. Regis in Detroit. Dresses are provided free to anyone who needs one, and suits are donated to boys through a partnership with Men’s Warehouse and other supporters.

“It’s going to be super fancy!” Jamie Greene Kaniarz, the organization’s executive director, tells Emma, who has deep brown eyes and short, pixie-style hair, highlighted a golden blond.

She is among the 50 or so teens planning to attend the event, and who also take part in Wish Upon a Teen’s other programs.

Soto, a native Californian, had a career as a child-life specialist in Los Angeles before she and her family moved to Bloomfield Township a little more than six years ago.

“My main job was to normalize a child’s life during hospitalization - from diagnosis to cure, or possibly, death - and working with families to keep things as normal as possible during a really chaotic time,” says Soto, 44.

She noticed that there were lots of programs for small children and plenty of enrichment-type activities for adults. But there was a pretty gaping hole when it came to teens.

In the last three years, “we’ve grown immensely because nobody focuses on teenagers,” Soto says. “We try to give them the same opportunities that every adolescent should have and deserves to have, no matter what you’re going through in your life.

“Kids that are battling life-threatening illnesses can’t necessarily go to the mall and hang out with their girlfriends.”

Wish Upon a Teen offers spa day events, pajama party movie nights, cooking classes and other programs for teens who want that experience.

“If you and I went to the mall when we were that age, we’d be talking about boys and parents and what did you get on that last test,” Soto says. “But these kids … talk about their ports, they talk about, you know, ‘Can you believe nurse so-and-so shoved that bedpan under you? That’s so rude.’ And they talk about their doctors, and their life experiences. That is so vital for them to continue to grow and get through whatever they’re going through.”

Things are different for Emma now. She endured surgery, radiation of her brain and spine, chemotherapy and, for a while, couldn’t walk normally. She needed casts on both her legs for 11 weeks last fall.

Although her cancer is in remission, she says she still gets nauseous and feels sick. She has a good deal of memory loss, too, so her classes at L’Anse Creuse High School are much harder than they were before cancer.

“I had to grow up when I was sick,” she says. “I’ve had to grow up to understand being sick and what I have to do. Like, how am I going to get all my homework done and study for that test? … It’s more important than finding out what I’m going to do tonight with friends.”

While other girls obsess about whether to wear their hair up or down for prom, Emma is just happy to have hair at all.

Hers has come back in thinner and darker than it was before chemotherapy and radiation.

Emma says time with people who really do understand helps.

“It’s nice to hear things that they go through, too, and hear that it’s not just you going through it,” Emma says. “A lot of it is the same. We get chemo and then we get sick. Most of us lose our hair. That’s just how it all goes. Most things, like side effects, you find another person who has maybe the same one, and then you can see how they got through it, or you can tell them how you got through it and give them advice.”

Beyond the outreach and event planning, Wish Upon a Teen also transforms hospital rooms into comfortable, colorful spaces with personality through its Design My Room project, giving a boost to teens hospitalized for more than two or three weeks.

“We learn about the patient, what are their likes, what are their favorite things, how would they like their hospital room to be designed,” Soto says. “We get requests for everything from the Red Wings to Hello Kitty and everything in between.”

So far, complete room makeovers have been done at Children’s Hospital of Michigan in Detroit; C.S. Mott Children’s Hospital at the University of Michigan in Ann Arbor; Beaumont Children’s Hospital in Royal Oak; Mattel Children’s Hospital at the University of California, Los Angeles; Amplatz Children’s Hospital at the University of Minnesota in Minneapolis, and Children’s National Medical Center in Washington, D.C.

“There is research that shows the more calm and comfortable you are, the quicker you recover,” Soto says, noting that the organization can get as many as 10 requests for room makeovers in a week’s time.

Wish Upon a Teen also does free, weekly outreach for kids with autism spectrum disorders and learning disabilities, helping them interact and communicate through a variety of weekly programs, including music, stop-motion animation, cooking classes, theater, sports camps and more.

Next year, it will host two proms, one for kids with life-threatening illnesses and one for teens with autism spectrum disorders and learning disabilities.

Soto added outreach for autistic teens to the nonprofit’s mission partly because her own 6-year-old son is on the spectrum.

“As I was learning about him and sitting in a lot of doctor’s appointments, and looking around the waiting rooms, I realized these teenagers that are diagnosed don’t have early intervention. They live in a bubble because they’ve been bullied because of being different, and they have so many similarities to kids dealing with a cancer or other life-threatening illnesses. They’re all just living in bubbles for different reasons. But it’s not the same bubble, and you’ve got to be able to provide different environments for them to get out, to have those different experiences, to build that trust.”

Soto takes no salary for her work, and has a staff of just two full-timers and one part-time employee. She estimates that 95% of donations to Wish Upon a Teen go directly to helping kids.

“It was never my intention to profit off of this,” she says. Payment is seeing the look in the eyes of girls like Emma, and of other kids who could use help, support, guidance.

“It’s pretty special,” she says.


Information from: Detroit Free Press, https://www.freep.com

Copyright © 2018 The Washington Times, LLC.

The Washington Times Comment Policy

The Washington Times is switching its third-party commenting system from Disqus to Spot.IM. You will need to either create an account with Spot.im or if you wish to use your Disqus account look under the Conversation for the link "Have a Disqus Account?". Please read our Comment Policy before commenting.


Click to Read More and View Comments

Click to Hide