Move for Kids’ Teen Grand Marshal Shares His Story

Alexis Jiminez, age 15, was born with a rare genetic disorder known as Waardenburg syndrome, which causes hearing loss and changes to the coloring of the hair, skin and eyes.

 

Just three years ago, in 2017, the teen — who has been treated at the Ann & Robert H. Lurie Children’s Hospital of Chicago since 2007 — received devastating news. He was diagnosed with a cancerous brain tumor known as germinoma, which accounts for less than 5% of all pediatric brain tumors.

 

“The scariest thing was the feeling that you were gonna die,” Alexis, a resident of the Belmont Cragin/Hermosa area of Chicago, says. “I didn’t think I was going to make it, but here I am today.”

 

Surgery, three rounds of chemo and six weeks of radiation followed his diagnosis. Thanks to the expert care and treatment from his team of surgeons, nurses, therapists and volunteers, today, Alexis is thriving.

This year, Alexis is serving as the grand marshal of the 2020 Move for Kids event, which has transformed to a virtual event due to the COVID-19 pandemic. He will kick off the community-wide fundraising event by sharing his story and acting as the patient champion who is an advocate, ambassador and inspiration.

 

He’s a proud member of the Kids Advisory Board at Lurie Children’s. Through this board, he provides input to help improve programs and make a child’s hospital stay more positive.

 

“He wants to go to school to be a doctor,” Alexis’ mom, Irene Jiminez, says. “He wants to help people like him. There was a period where he was feeling a little down, frustrated and angry. I feel like that lasted a couple weeks and changed his attitude. He wants to help take care of his family as well. He’s matured a lot. He’s very polite, eager to help other people.”

 

Learn more about Alexis’ journey during Move for Kids on May 17. To register, visit the Lurie Children’s Move for Kids registration page.

 

About Ann & Robert H. Lurie Children’s Hospital of Chicago

With the COVID-19 pandemic, this Ann & Robert Lurie Children’s Hospital of Chicago is one of the top pediatric providers in the nation, treating Chicago’s children with the highest-quality care. The annual Lurie Children’s event, Move For Kids, may look different this year but the goal is the same.

 

For more information, visit luriechildrens.org.

 

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