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Boca Raton teenage caregiver's story spreads around country

Posted at 5:15 PM, Dec 21, 2017
and last updated 2018-01-10 13:46:34-05

Even though they’re just children themselves, more than one million juveniles are caregivers for their disabled or sick family members, taking time and energy away from their schoolwork, extracurricular activities and social lives, according to the American Association of Caregiving Youth.

Jonathan Gutierrez of Boca Raton is among them.

"He should be worrying about homecoming and school events and going to the movies with his friends and hanging out and everything else,"  his mother Jennifer Gutierrez said. "All he cares about is football and his family."

"It's been a struggle, but I've been getting through with it," Jonathan said.

He has responsibilities many adults have a tough time handling. Jonathan's mom, Jennifer, has multiple sclerosis.

“I usually have to carry her to her bed, help her go to the bathroom, make sure she’s Ok," he said when her MS flares up. 

“I have three really good weeks and one really bad week," his mother said. "That week I don’t walk.”

His grandma has pre-dementia. 

“It’s her short-term memory that’s starting to go," Jennifer said. Jonathan makes sure grandma takes her medicine.

His brother has had seven surgeries in his seven years of life.

“He’s had what’s called sagittal craniosynostosis," Jennifer said. "[His skull] was squishing his brain, so they had to expand his head.”

Jonathan’s dad has two jobs, working 60 hours a week to try to provide for the family. During the week, Jonathan runs the household.

“Without Jonathan here, I couldn’t do everything by myself," Jennifer said. "There’s some days I can’t lift my head off the pillow.”

He helps his younger brother with his homework, makes dinner and does whatever else his mom needs.

"He is a hands-on big brother. He makes him dinner. He gives him a bath. He does his homework with him," she said. "Because I can’t do it. Because of my MS, I can’t even do second-grade homework."

He can’t really talk to his friends about taking care of his family because they don't relate to him.

“They live stress-free," he said.

However, he's a member of the American Association for Caregiving Youth program at his high school. More than 500 students in Palm Beach County are part of it. They have group meetings and also go on outings together to try to take a short break from their stressful lives.

“They understand what you’re going through," Jonathan said.

“If he needs to talk to somebody, they have the counselors there," Jennifer said. "It’s just an amazing program.”

Jonathan recently talked to "VICE News Tonight" on HBO about his life. The Facebook video has more than one million views. Jennifer hopes it lets other kids know they're not alone and encourages more programs around the country and world like what American Association for Caregiving Youth offers in Palm Beach County.

“He will make a difference for everybody," Jennifer said. "For all the kids that don’t know about the programs.”

Sacrificing his teenage years for the sake of his family is all for one reason, love.

“It’s humiliating, but he doesn’t make me feel that way. I feel that way myself," Jennifer said. "For him, if I cry, he yells at me, 'Don’t cry Mommy, don’t cry. This is not something that I don’t want to do. I love you.'”

“She tells me every day how much she loves me and how much she appreciates me," Jonathan said. "It means a lot to me. I love her so much.”