A smile almost never leaves the face of Raúl Hernández. He says he’s the happiest kid in the world and would never change places with anyone else.
Those words are surprising, coming from a 16-year-old who suffers from cerebral palsy and has been using a wheelchair all his life, unable to do basic tasks like walking, eating or going to the bathroom by himself.
He also has intense pain from cramps. A simple emotion can trigger a painful scream and lock his legs as rigid as a rock.
But Hernández keeps smiling. And there are other surprising things about him: his mental lucidity, the richness of his conversation, the three languages he speaks — Spanish, English and Italian, his fascination with music, and his love of life.
“Thank God I was born this way. I have spread my happiness to many people and I am the happiest kid in the world,” he said. “I have the best parents in the world. They are both my heroes.”
Aside from the six therapy sessions he receives each week — language, occupational and physical — and the nurse who helps him six hours per day, his father, Raul Sr., who is a Cuban-born physical therapist, works with him every morning before he heads off to work.
Marta Giuliani said her pregnancy went well but there were complications during the birth. The boy was asphyxiated by the umbilical cord, and the family’s life changed forever.
“The doctors were shouting ‘He’s dying, he’s dying,” recalled the Argentine-born Giuliani, 59. The baby spent more than 40 days in the incubator, she said.
She said she eventually overcame her wish that her son would have turned out different, but confesses that she still worries about what will happen to Raúl when she and her husband are no longer around.
“Despite his condition he’s a very healthy boy. He’s only had a fever three times in his life,” she said. “What’s going to happen to him when we’re not here?”
Raúl is not thinking about that time. He’s dreaming big, with plans to attend college, become an Italian language teacher and marry a fellow student at Miami Senior High School, where he’s a sophomore.
“I know she likes me, maybe not like a boyfriend, but I plan to marry her,” he said.
There’s something else he yearns for every day: Going to the beach, to restaurants, getting to know Hialeah, Miami’s downtown and its museums and many other places.
But the family’s 1998 van is now too uncomfortable, old and dangerous.
“Now that he’s 16 he’s too big. His father has to pick him up from the wheelchair and put him in the car. When he feels he’s not safe his neck becomes rigid, and sometimes he hits the roof or the doors,” his mother said.
The van is also risky. “Every outing is very complicated and requires a lot of accommodations. And despite everything we do he’s not secure,” said Giuliani.
Because of the old van, Raúl has already missed friend’s birthday parties, Sunday trips to the beach, school activities and trips to the library near his home in Westchester.
“He never demands anything, but he has so many … dreams to fulfill, desires to be with his friends, that time is passing and we have not been able to do them,” his mother said.
Raul’s family cannot afford to buy a new handicap-accessible van with a ramp for wheelchairs, and they need someone who can donate one.
“I want a van with a ramp so I can continue to achieve my dreams and drive around, because I love to get to know different places,” said Raúl, so overcome with emotion that a painful cramp hits his right leg.
Raúl enjoys the simple things in life, like listening to music, hugging his parents and going to school.
And he has a message for teenagers who are not disabled. “I tell them to fight for their dreams and be good. We don’t have to ask for a lot of things. We have to be happy with what we have,” he said.
How to help
Wish Book is trying to help hundreds of families in need this year. To donate, pay securely at MiamiHerald.com/wishbook. For information, call 305-376-2906 or email firstname.lastname@example.org. (The most requested items are laptops and tablets for school, furniture, and accessible vans.) Read more at MiamiHerald.com/wishbook.