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.”

Events feature sensitive Santa, holiday lights, craft activities and more!

Are you looking for sensory-friendly events that the whole family can enjoy this holiday season?

There are a number of sensitive Santa opportunities, festivals and other holiday activities going on across Illinois.

Our Special Events page includes a roundup of opportunities designed specifically for youth with disabilities and special healthcare needs.

Here’s a look at some of the special programs available and other event guides for parts of the state:

• The Secret Sleigh Project coordinates volunteers to provide in-home Santa visits to children who are medically fragile nationwide. See our Secret Sleigh event listing for more details on how to request a visit.
  
• The National Federation of the Blind is offering letters from Santa and winter celebration letters in Braille to children who are blind or have low vision. The program is for children 10 years old and younger. Please complete the letter request form by Dec. 17. Letters are available in English or Spanish. If you have any questions, call (410) 659-9314, ext. 2236, or email education@nfb.org.
  
• The Santa Cares program from Autism Speaks and Cherry Hill Programs provides sensory-friendly Santa experiences in Illinois and the St. Louis area on Dec. 4. These visits are free. Keepsake photo packages will be available for purchase. Reservations are required. Visit the Santa Cares website for a complete list of Santa’s stops. Be sure to select “Santa Cares”, “Caring Santa” or “Sensitive Santa” when checking your location. (Note some event dates may vary. Please check your location to confirm your date and time.)

• For families in the Chicagoland area, Chicago Parent magazine provides a list that includes opportunities to visit with Santa and other events tailored to the needs of children with disabilities.

• In central Illinois, check out this list from ChambanaMoms.com for events within driving distance of the Champaign-Urbana area or this list of seasonal light displays and events from the Mahomet Daily.
  
• SpringfieldMoms.org’s seasonal guide provides a roundup of activities happening in the capital city area.

• Southern Illinois residents can find many fun, seasonal activities on SI Families’ event calendar. It’s packed with ideas including a drive-thru Santa event in Marion, the Lights Fantastic Parade in Carbondale and even a “Home Alone” drive-in movie event at Murphysboro High School.
  
• The animals at the Lincoln Park Zoo, St. Louis Zoo, and other zoos throughout Illinois are celebrating the season, too! Contact your local zoo to find out what’s happening and when.

Be sure to check our Special Events page often as we add more holiday activities to the list. If you know of a good sensory-friendly event to share, please email us at dscc@uic.edu.

Happy Holidays!

Please note, the University of Illinois Chicago’s Division of Specialized Care for Children (DSCC) is not involved in the organizing or scheduling of these holiday events. If you have questions about a specific event, please contact the event sponsor or organizer.

DSCC partners with IL LEND to offer an online space for parents to learn about important topics, gain resources and discuss strategies

A new webinar series provides an online space for parents and caregivers to access educational workshops, learn about resources and discuss strategies and support needs.

The series is open to all parents and caregivers of children enrolled with the University of Illinois Chicago’s Division of Specialized Care for Children (DSCC).

It’s the result of a partnership between DSCC and UIC’s Leadership and Education in Neurodevelopmental and related Disabilities Program (IL LEND).

There is no cost for families to participate.

Please note this workshop series now has a parent education focus rather than a traditional support group.

The virtual workshops will take place via Zoom on the third Wednesday of the month through April.

Workshops topics may include:

• Respite care
• Feeding
• Ventilator maintenance/cleaning
• Transportation
• Navigating relationships with staff

The workshop schedule is for the following dates from 7 to 8 p.m.:

• Feb. 16
• March 16
• April 20

The topic for the Feb.16 session is Early Intervention. The guest speaker is Maria Kastanis, assistant director of the Early Intervention Training Program (EITP) at the University of Illinois at Urbana-Champaign.

The details and registration information for the next meeting are below:

• WHAT: Educational workshop series for parents/caregivers of children and youth enrolled in DSCC’s programs
• WHEN: Feb. 16, 7 to 8 p.m.
• TOPIC: Early Intervention (Note: the discussion part of the workshop will include a facilitator for Spanish-speaking families.)
• WHERE: Virtual via Zoom
• Registration link

Visit the workshop series website for more details about the series and individual meetings.

We’ll also post details about upcoming meetings in the Events section of our website.

If you have questions about the series or an individual meeting, please fill out the Contact Us section of the workshop series website.