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This 13-year-old loves Pitbull and Shakira, but he needs more than that to help him walk

Miami Herald - 1/23/2020

Jan. 23--Nicolas Katrib is a 13-year-old who likes to listen to Gente de Zona, Pitbull and Shakira.

He likes to watch the Telemundo newscast in the morning and Caso Cerrado in the afternoon -- just like many teens who grew up in Miami to Cuban parents.

But Nicholas has cerebral palsy, a neurological condition that has affected his cognitive and physical skills. He can't walk on his own and has difficulty communicating.

His mother, Yordanka Fernández, is asking for help from the community so her son can receive additional therapy sessions. The family created a GoFundMe for the Nicholas Katrib Foundation where they have set a goal of $75,000. They have about $1,000 raised.

In 2015, the Miami Herald published two articles about Nicholas, the first asking for help in order to take Nicholas to Chicago, where he would receive therapy that would help him walk, and the second with the news that Gloria and Emilio Estefan had donated the money that was needed.

Five years later, Nicolas needs a new round of treatment. Fernandez hopes to take her son to the Shirley Ryan Ability Lab in Chicago, where Nicholas was treated in 2015.

"When we first learned of Nicholas' case back in 2015, the Gloria Estefan Foundation stepped in to assist with his treatment at a facility in Chicago that was specific to his needs," said Frank Amadeo, vice president of the Gloria Estefan Foundation. "Last year, we learned of his ongoing need for therapy and immediately reached out to several local organizations to see how they could assist Nicholas and his family. We remain hopeful that he receives the necessary assistance for his continued treatment."

Fernández, Nicholas' mother, is thankful for the Estefans' involvement.

"I am very grateful to Gloria Estefan for the support in 2015, but despite feeling a little embarrassed, I can't stop doing everything in my power to help my son," she said.

Fernández cleans houses for a living. The teen's father installs fire sprinklers for a living. They can't afford the costs that come with the therapies and transportation to help their son.

The clinic estimates that the cost of therapies, with a discount for the family's situation, would reach around $50,000 for eight weeks. This doesn't include travel costs to Chicago.

The family is under Medicaid, which does not cover programs out of state and has restrictions on what it covers in state.

Nicholas was born prematurely, after six months. His organs had not fully developed, and he weighed only 1 pound and was 11 inches long when he was born on Dec. 24, 2006. The growth of his liver, lungs and stomach had to be stimulated with steroids, as well as his skin and corneas.

The doctors thought that Nicholas would remain in a vegetative state, but his parents began to take Nicholas to rehabilitation treatments. In 2014, he was diagnosed with autism.

After the initial treatment in Chicago in 2015, when Nicholas was 8, his condition improved, according to his mother. He could walk with crutches and communicated well.

But resources and efforts had to be diverted when the father was diagnosed with lymphoma, a type of cancer that affects the immune system. According to Fernández, Nicholas has always been close to his dad and realized something was going on. This made his autism worse.

The therapists and mother decided that it was better to let him rest from the therapies for a while. (His father is in remission.)

"At that time, Nicholas was going through puberty and all that resulted in his physical condition getting worse," Fernandez said.

Nicholas now exercises every day, but his feet are deformed and it is becoming more difficult for him to walk. Nicholas also needs medical attention for scoliosis that has gotten worse because of his condition.

At the Chicago facility, Nicholas was treated on a machine known as the Lokomat. According to the Shirley Ryan Ability Lab website, a patient is suspended in a harness over a treadmill and walks with the help of a robot.

A computer controls the walking. The theory is that the brain will recognize the walking patterns and send signals to the neural pathways so the patient can move.

Two hospitals in Miami that offer this treatment require the patient to be 18 years or older. Jackson Memorial Hospital does accept kids but Medicaid covers only three therapy sessions a week.

The mom says three sessions aren't enough. At the Chicago facility, according to an email from a doctor that Férnandez forwarded to el Nuevo Herald, Nicholas would be treated three times a day for eight weeks.

Despite his condition, Nicholas laughs and jokes around with his mom. Even though he was born in Miami, he calls himself a "balsero," implying he fled from Cuba in a raft.

Férnandez says she will keep pushing forward.

"Only if I die would I ever stop," she said. "My son is the best and most important thing to have happened in my entire life."

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