By Alyssa Sanchez –

When Amalia Gonzalez wakes up her first instinct is go check on her sister to see if she is awake and then she changes and feeds her. Every other day she takes care of her sister and every other day she attends school. On the weekends, she works.

Amalia, 19, is among the many people who strive to care for a loved one who is living with cerebral palsy.

For as long as Amalia could remember she has been the guardian in Luz Maria’s life. With both of Gonzalez’s parents working full-time and her brother not be able to help out, Amalia has had to give up her own childhood.

“Basically my job is to be mother. Everything that a mother would do to a child I do. I feed her, I change her, I bathe her, and she has to be fed by the mouth,” Amalia said.

Amalia and her sister Luz Maria, 24, grew up together. They did everything together and then one day Amalia realized she was growing up and Luz Maria stayed the same. Instead of Amalia being the baby sister, now Luz Maria was the baby.

Cerebral palsy is a physical disorder where the brain has a hard time controlling muscles and body movement. Cerebral palsy does not have a cure and usually does not worsen over time but can be regulated with different treatments. Babies usually show symptoms within the first few years of life.

According to researchers at Children’s Memorial Research Center, two of every 1,000 school-aged children in the United States are affected by cerebral palsy. The cost on society is estimated at $5 billion and it is considered “the most costly of the clinically significant birth defects in the United States.”

One time at 15 years old, Amalia was left all alone for three months to take care of her sister Luz Maria, while her mother left to Mexico on a family emergency.

“It was the moment in my life where I understood what my sister had,” said Amalia.

At night the Gonzalez sisters would make a phone call to their mother to tell her everything was okay.

Afterwards they would hang up the phone the two sisters would cry themselves to sleep in the comfort of their own arms wishing for their mother to come home.

Now in college in Chicago, Amalia still takes care of Luz Maria.

Amalia commutes from the Chicago suburb of Glenview to Columbia College Chicago for 16 hours a week to study for her dream of working in the television industry. She also works 16 hours at a restaurant on the weekends.

“My choice of going to school was for my sister and my mom because I want to bring a better life to them. I realize that if I go to school my sister would be able to get the right attention that she needs like a personal nurse and therapy because it is all really expensive,” Amalia said.

In the past year, Amalia had to face her parents getting a divorce. Her mom helps when she gets home from  her job as a housekeeper. On Tuesdays and Thursdays, a friend watches her sister from 11 a.m. to 3 p.m.  Her father also worked as a cook at two country clubs and helped out with her sister’s needs.

“My dad was the one to help my mom by driving my sister to the doctor and paying for most of the expenses and now he is only required to pay child care but that is not enough,” Amalia said.

Since her parents went through a divorce, Amalia was able to apply to be Luz Maria’s primary care giver and get assistance from the government.

“My mom is going to die soon and I am her legal guardian. I fear more the fact that I am going to be alone with my sister than my career,” Amalia said.

Aneta Wybraniec, 20, currently a nursing student at Oakton Community College has been friends with Amalia since the seventh grade.

“She has a lot of potential and she never gives up on her future even though it takes a toll on her because her parents are divorced and it is like she has a child,” Wybraniec said.

Wybraniec said it requires a lot of Amalia’s time to care for someone but she remains positive.

“It makes things harder but not impossible,” she said.

Michelle Bailen, 20, has known Amalia since sophomore year in high school and they have been friends ever since.

“She always has a lot going on in her life such as her family, school, work, extracurricular activities and she always finds a way to get everything accomplished,” Bailen said.

Amalia has seen her sister progress some.

Luz Maria graduated in 2007 from Park School in Evanston. She earned her education up to the 12th grade and was able to get an extension of two years to go to school.

“Amalia felt really connected to her sister on her sister’s graduation day. She really enjoyed being there and got emotional when she saw her sister upset because it was her last day of school forever,” Bailen said.

Amalia just wants her sister to be happy.

“Every time she laughs at her favorite cartoon, she smiles when she is looking at pictures in magazines or dances to her favorite song is when I realize that all this stress, being worked up because of school, is all worth it when I see her smile,” Amalia said.