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.”

In-person and virtual activities to help youth with and without disabilities stay engaged and learning this summer

Summer is quickly approaching. And though the COVID-19 pandemic is not yet over, the ease in safety restrictions means more in-person activities will be available for this year’s break from the school year. 

If you’re looking for a way to help your child stay engaged and learning, we’ve compiled a list of both in-person and virtual summer camp activities and enrichment programs for youth of all ages and abilities.  

Our list of inclusive activities includes daily adventures, arts and crafts, sports camps, college preparation opportunities and condition-specific programs. 

Our events calendar shows the activities listed by date. You can also search for programs in your area by clicking on a regional office near you. 

For more virtual learning and educational resources for youth, visit the Childcare, Learning and Education Tools section of our COVID-19 Resource Directory. 

Know of an in-person or virtual summer camp opportunity to add to our list?

Send us the details at dscc@uic.edu. We’ll continue to update our list of camps and activities, so please check back often. 

IEMA highlights importance of disaster preparedness for people with functional and access needs during the month of May.

While most disasters can’t be prevented, the stress of such situations can be reduced significantly through personal preparedness. This preparation is particularly important for households with members who have disabilities, functional needs or may need assistance during an emergency.

Throughout May, the Illinois Emergency Management Agency (IEMA) and local emergency management agencies are highlighting the importance of disaster preparedness for people with functional and access needs.

“Disasters can cause power outages, force people to evacuate their homes or create other dangerous situations,” said IEMA Acting Director William P. Robertson. “We encourage everyone to be prepared, especially those who may have medical, functional or access needs.”

Robertson said IEMA has information available on the Ready Illinois website (www.Ready.Illinois.gov​) to help people and caregivers prepare for emergencies. A guidebook, “Emergency Preparedness Tips for Those with Functional Needs,” offers preparedness tips for people with visual, cognitive or mobility impairments; people who are deaf or hard of hearing; those who utilize service animals or life support systems; and senior citizens.

For each functional need, the guidebook provides a list of supplemental items for a disaster kit, tips on developing an emergency plan, suggestions on how to be better informed about community emergency planning and a checklist of preparedness activities.

The Ready Illinois website also offers more than two dozen preparedness videos in American Sign Language on such topics as what to do before, during and after tornadoes; severe thunderstorms and flooding; how to build an emergency supply kit; and what to do if you’re instructed to evacuate. These resources and more can be found on Ready Illinois’ Functional Needs page.