Acting allowed Izzy Gonzalez to break out of her shell and thrive while living with multiple disabilities

Izzy Gonzalez describes her childhood as “a storm” filled with severe illness, medical trauma and frightening diagnoses.

“As a child, I accepted that death was going to happen, and I just grew numb to that fact. I didn’t think I’d make it to high school,” recalled Izzy, now 20.

Izzy was born with VATER syndrome, a complex condition named for the body parts it affects:  vertebrae, anus, trachea, esophagus and renal (kidney).

Her condition meant frequent surgeries, hospitalizations and appointments throughout her childhood.

The isolation and uncertainty took a toll, especially as Izzy entered middle school. But when she accepted an invitation to join a local theater program for youth with disabilities, everything changed.

“I was in a tunnel for the longest time, but I found my light. Theater is my light,” Izzy said.

Today, Izzy is a college student studying theater and planning for a promising future.

She recently gave a moving speech detailing her journey with disability during “That’s What She Said 2024.” The event was a live storytelling performance featuring local women from the Champaign-Urbana community.

Izzy stood on stage during the Feb. 24 performance and read a letter to herself called “Love, Izzy.” In the letter, she speaks to her younger self at 10 years old. At that time, she was in a medically induced coma for 30 days due to a severe infection of influenza B.

“Even though you have been in and out of the hospital since birth, this is the toughest moment your body will ever face…” Izzy read aloud.

“I still feel in my heart the fear and doubt that we would never see a real sunset ever again. I’m here to tell you that you will wake up and you’ll see so many more sunsets. We made it a whole two decades, so much longer than we ever thought possible… In true Izzy fashion, we defy all the odds.”

You can watch Izzy read her powerful letter in full in the video below:

Fear, doubt and isolation

Izzy was born with no anus and only one kidney, which grew bigger to compensate for her kidney that didn’t develop. She also has scoliosis and is missing some of her vertebrae. Doctors initially told her family she’d never be able to walk.

Izzy was also born with a tracheoesophageal fistula (TEF), which meant there was an abnormal connection, or “tunnel” as Izzy calls it, between her esophagus and trachea (windpipe). She experienced frequent vomiting, acid reflux and difficulty breathing until her TEF was officially diagnosed at age 12.

Izzy’s family moved to central Illinois from California after her birth so she could receive treatment at Carle Foundation Hospital in Urbana.

She enrolled with the University of Illinois Chicago’s Division of Specialized Care for Children (DSCC) in 2005.

DSCC helped coordinate Izzy’s medical appointments among many different specialists and arranged travel and hotel stays for her family.

Izzy underwent several major surgeries to correct her scoliosis and TEF, among others. She also experienced severe illnesses due to her weakened immune system.

“They knew my name in the pediatric ward and that was just the life I was living,” Izzy recalled.

This life meant Izzy missed many days of school, including all of sixth grade, due to medical reasons. The time away from her peers made it hard for Izzy to connect socially.

“I was gone from school so much, people in middle school thought I was a new kid,” Izzy said. “I was so much of an introvert because I didn’t know how to talk to anyone. I was that person who specifically chose to sit by myself at a lunch table at the back of a lunchroom.”

One day, Izzy’s mom asked if she’d like to try the Champaign Urbana Theatre Company’s Penguin Project.

The Penguin Project is a national program that provides a supportive environment for children with disabilities to explore their creative talents in a community theater experience. Youth with disabilities are the artists and “peer mentors” without disabilities join them on stage.

Not knowing what she was agreeing to, Izzy replied “yes.”

“I was bored with life so much that I was questioning my existence. I was questioning why I was here,” Izzy said, noting she had fallen into a deep depression and thought about self-harm.

Izzy felt she had nothing to lose.

“No limits”

The Penguin Project brought unexpected hope and unlocked a new passion and excitement within her.

“When I fell into The Penguin Project, I thought, ‘This is fun! I get to socialize with people and meet people like me,’” she said. “It’s an amazing program. You get to socialize with so many people that you wouldn’t have met otherwise, and that’s when I really found my people.”

Izzy was 12 when she joined The Penguin Project and has stayed involved with it ever since.

“Theater essentially saved my life and altered the course of my entire life. It altered the course of my future,” she said. “I got to enjoy life. I got to enjoy existing. I remember that first year, I was just enjoying being alive and that’s something I could never repay back in a million years. And that’s why I love The Penguin Project so much.”

Izzy started to act in other local theater productions. She calls being on stage and playing different characters a fun and freeing experience.

“In the theater, we get to be whatever we want. There are no limits,” she said.

Izzy received a nomination for a best up and coming actor award from the Champaign Urbana Theatre Company for her 2017 portrayal of Wally Webb in the play “Our Town.”

Izzy also participated in the Illinois Miss Amazing program. Miss Amazing provides opportunities for girls and women with disabilities to share their abilities and ambitions. In 2018, she became the Illinois Miss Amazing Junior Teen Queen.

As she prepared to graduate high school, Izzy knew she wanted to pursue theater in college.

She decided to attend Parkland College in Champaign, where she is studying theater arts and focusing on acting. Izzy recently completed her fourth semester and says she’s gained invaluable experience with the different theater production roles.

She hopes to eventually transfer to Millikin University in Decatur and earn her Bachelor of Fine Arts in theater. She also wants to become a makeup artist to help financially support her acting goals.

“A bright future”

Izzy currently lives at home with her parents due to her medical needs. She is working on becoming more independent so she can live on her own. After 19 years as a DSCC participant, she left the program in March 2024 as she prepares to receive adult services.

As she enters adulthood, Izzy enjoys raising awareness and advocating for people with disabilities.

She encourages other youth with disabilities and special healthcare needs to have fun as much as possible.

“That’s what always got me through my hospital stays. I had fun. I knew I was being watched medically, and I knew I was going through sicknesses, but I still had fun. I was still a child,” she said “And I’d say to the parents, make it fun for your child, just to take their minds off of what’s happening. Give them activities to do.”

Izzy also stresses the importance of a positive mindset.

“If you have a pessimistic mentality than nothing good is going to come of that, and you’ll just feel bad the entire time. If you have a more optimistic mentality, you’ll be able to cope better,” she said. “Always try to live in the moment, no matter what the situation is.”

As Izzy looks back on the “storm” of her childhood, she is thankful for the support she’s received along the way from her parents and her sister as well as DSCC.

She’s also incredibly proud of how far she’s come.

As she eloquently spoke to her 10-year-old self in her “Love, Izzy” letter: “One thing you’ll find out is the word ‘failure’ doesn’t seem to be in our medical vocabulary…” Izzy said.

“I can’t wait for you to experience everything that’s to come, and I can’t wait to experience what’s to come. I know that we will have a bright future.”

The 2023 Illinois Miss Amazing program is accepting applications through Feb. 15.

Miss Amazing is a national nonprofit program that encourages girls and women with disabilities to consider their goals, challenge themselves and take pride in who they are.

The Illinois Miss Amazing experience brings together a diverse group of participants to build friendships, self-confidence and self-advocacy skills.

Illinois Miss Amazing is now taking applications for its 2023 Amplify event on March 18 in Bolingbrook.

Participation is open to girls and women ages 5 and older who have:

• An Individualized Education Program (IEP) or Individualized Program Plan (IPP)
• A 504 Plan
• Supplemental Security Income (SSI)
• A physician’s records proving disability

The Illinois Miss Amazing Amplify event activities include:

• Show rehearsal
• Interviewing
• Passion presentation
• Hair and makeup

This year’s event also features a new category. Miss Amazing Mentor is for women ages 36 and older. Mentoring can include:

• Helping the younger Miss Amazing age divisions
• Assisting at your job
• Helping at events or with organizations you feel passionate about!

Miss Amazing Mentor participants will take part in the Amplify event interview, passion presentation and personal introduction.

The March 18 Amplify event is at the Bolingbrook Community Center, 201 Canterbury Lane, in Bolingbrook.

Illinois Miss Amazing is accepting applications until Feb. 15 or until all spots are filled.

The program is also accepting applications for volunteers who want to share in the experience. Visit the Miss Amazing website for details about volunteer options.

You can learn more about the Illinois Miss Amazing program and how it helped one of our participants set goals and pursue her dreams at https://dscc.uic.edu/dscc-participant-promotes-illinois-miss-amazing/.

The program provides a nurturing, empowering experience for girls and women with disabilities

Illinois Miss Amazing is accepting applications for its 2022 program.

Miss Amazing is a national nonprofit program for girls and women with disabilities. The program aims to build self-confidence and vital self-advocacy skills for participants as well as nurture a sisterhood of girls and women from different walks of life.

According to the Miss Amazing website, girls and women with disabilities face a unique set of economic, social and political challenges. The Miss Amazing program seeks to encourage future leaders and break down stereotypes by empowering girls with disabilities from a young age to take pride in who they are, to set ambitious goals and to fight for the respect that they deserve.

Miss Amazing is open to girls and women ages 5 and older who have:

• An Individualized Education Program (IEP) or Individualized Program Plan (IPP)
• A 504 Plan
• Supplemental Security Income (SSI)
• A physician’s records proving disability

Illinois Miss Amazing is accepting applications for participants and volunteers for its annual Amplify event on April 9 at the Yellow Box in Naperville. The application deadline is March 1.

The Illinois Miss Amazing experience includes:

• Show rehearsal
• Interviewing
• A fun evening wear presentation
• Sharing your passion and creativity on-stage
• Building friendships

This year’s event is in-person and will feature two shows and one big celebration.

Learn more about the Illinois Miss Amazing program and how it helped one of our participants spread her wings on stage and off at https://dscc.uic.edu/dscc-participant-promotes-illinois-miss-amazing/.

Inspire someone you know to participate in Illinois Miss Amazing.

Applications will be accepted until March 1 or as soon as all spots are filled.  

2018 Illinois Miss Amazing Junior Teen Queen Izzy Gonzalez encourages others to share their talents and creativity.

Fifteen-year-old Izzy Gonzalez didn’t know what to expect when she decided to take part in her first Illinois Miss Amazing event in 2017.

Miss Amazing is a nationwide program that provides opportunities for girls and women with disabilities to share their abilities and ambitions.

Izzy attended the two-day Illinois event in Naperville that includes an interview, evening wear presentation and on-stage introduction.

She immediately fell in love with the experience and returned in 2018 to be crowned the Illinois Miss Amazing Junior Teen Queen.

Now, Izzy is ready to pass on her crown. She encourages other girls and young women with disabilities to consider Miss Amazing and other venues to share their talents and creativity with the world.

“It’s an amazing experience and if you’re kind of shy, it really helps you bring yourself out of your shell,” Izzy said.

Illinois Miss Amazing is currently accepting registrations for participants and volunteers for its 2019 event on April 5-6 at the Yellow Box in Naperville. The deadline to register is Feb. 15.

More information and the registration link is available on the Illinois Miss Amazing website.

Miss Amazing is for girls and women ages 5 and older who have an IEP, IPP, 504 plan, SSI or a physician’s records proving disability. The program aims to build self-confidence and life skills for participants as well as nurture a sisterhood of girls and women from different walks of life. The only cost to participate is five cans of food to be donated to the local community.

“It’s a fun way for them to shine,” Izzy’s mom, Susan, said.

Izzy was born with VACTERAL association, which is a group of birth defects that occurs together and affects many body systems. Izzy’s main issues are severe scoliosis as well as other orthopedic, urological, gastroenterological, neurological and respiratory issues.  She’s been a participant with the University of Illinois at Chicago’s Division of Specialized Care for Children (DSCC) since 2005.

Susan said Miss Amazing and other programs for youth with disabilities have helped her pinpoint her passion and become more confident.

Izzy says she first caught the theater bug through the Champaign-Urbana Theatre Company’s Penguin Project.  The Penguin Project is a national program that provides a supportive environment for children with disabilities to explore their creative talents in a community theater experience. Youth with disabilities are the artists and are joined on stage by “peer mentors” without disabilities.

Izzy joined the Penguin Project in 2016 and has done three musicals so far.

“From the end of the first show, I knew I just wanted to do this (acting),” Izzy said.

Izzy then learned about the Illinois Miss Amazing Program from one her fellow Penguin Project artists.

“I hadn’t done anything like that before,” she said of her first Miss Amazing event. “It’s hard to explain what it was like.”

Miss Amazing participants are asked to do a one-on-one interview, presentation in evening wear and a personal introduction. Izzy said the event also includes an optional talent showcase and a dance party on stage.

“They don’t judge you on this, it’s just for fun,” Izzy said, noting she chose to sing.

During her second Miss Amazing event, Izzy said she was shocked to be named junior queen.

“I was like, ‘Did they really just call my name,'” she said.

Susan said there were no words for seeing Izzy crowned on stage.

“My heart was so full,” she said.

Izzy says she’s looking forward to another fun Illinois Miss Amazing weekend and continuing to pursue her acting, singing and passion for theater.

She recently became involved with the Pens to Lens screenwriting competition. The Champaign Urbana Film Society runs the competition for  east-central Illinois K-12 students, who submit their written scripts for local filmmakers to produce as short films.

“For anyone who wants to share their creativity, I would say just do it. You never know what could happen,” Izzy said. “I didn’t know I would be able to write a screenplay, be an actress and win junior teen queen. You have to try.”