Hildebran Companioni is trapped in a body that shows him little mercy.
The 19-year-old is wheelchair-bound with crippling cerebral palsy and epilepsy. Since childhood, he has endured violent seizures up to four times a week.
“He has the worst kind of epilepsy, but with medication, the seizures have been controlled, which is a blessing,” said his mother, Digna Perez, whose life is consumed with caring for her oldest son and fighting to improve the quality of his life.
“That is my mission in life,” she said. Her son shares a Kendall apartment with Perez, a 13-year-old brother and her husband - Companioni’s stepfather.
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Her son’s problems began during childbirth, when he was starved of oxygen and suffered brain damage. When speaking of his medical challenges, Perez refers to it as “our condition.”
“That's how I see it; it’s our condition together,” she said.
On school days, she is up at 6 a.m. to prepare Companioni for his only outside activity: Attending special classes at G. Holmes Braddock Senior High, where he is learning to be more self-sufficient.
With the help of her younger son, Lazaro, she loads Companioni into her car and drops him off at school.
Lazaro, 13, helps his mother care for his older brother.
“I could not do it without him,” Perez, 41, says of Lazaro. “I call him my little man.”
To improve his chances of a fuller life, Perez fought to bring her son to the U.S. from Cuba a year ago this month. She had arrived earlier and left him in the care of her family. She faced several immigration hurdles, but was determined to bring him to the U. S. for better care.
She is comforted knowing that he’s going to school and learning.
“I know his life will not improve much, but he can learn things. For any parent of child like this, our biggest fear is the question of: ‘How will they manage when we’re gone?” said Perez.
For now, her son receives no medical insurance, no government assistance or food stamps. For him to get that kind of kind of help, he must be a Florida resident for five years. His main benefactor is the Miami-branch of the Epilepsy Foundation of Florida, which recommended him to Wish Book.
Companioni medications cost nearly $2,000 a month. He takes Clobazam, Keppra and Depakene to control the seizures, Perez said. One drug alone costs $1,600 a month. Perez said she successfully applied to the maker and is now receiving the drug for free for a one-year-trial period.
Still, life is not easy for Companioni. He only has the use of his right hand. He has cataracts caused by medication, which also has damaged his teeth and gums. He spends his days in three places: a wheelchair, a recliner and bed. His mental capacity is that of a child and he looks more like a 12-year-old than a 19- year-old.
A bright spot is that Companioni, using his limited vocabulary, can communicate, his mother said. “He has a very sweet personality and sense of humor,” she said.
“Other parents of children like him tell me they wish their children could say a few words. I’m lucky,” Perez said.
Perez said she has seen the change in her son since he began school with others like him.
Despite his crippled body, he has learned to brush his own teeth; he can go to the bathroom with help. If given a spoonful of food, he can carry it to his mouth. “These are all small victories, but that’s his life,” she says.
The financially strapped family has little extra income to enrich Companioni’s life.When he gets home from school, he watches Spanish-language television.
Among his favorite are courtroom reality shows like Caso Cerrado. He likes baseball and the Miami Dolphins, but since he speaks no English, he is limited to what he can watch and understand.
One thing on his wishlist for the holidays is the gift of music.
His mother says a desk-top computer would allow her and her younger son to download Companioni’s favorite music to pass the time listening together and singing along.
“We know that would make him happy and entertain him,” Perez said.
The family also needs help in purchasing the adult diapers Companioni must wear every day. “Those can get very expensive,” his mother said.
Despite his disabilities, she says her son has a wonderful attitude.
Despite having to rely solely on others to help him live, he is never demanding, Perez said.
“When asking for something he always says, ‘please’ and ‘thank you.’ He doesn't want to be a bother. He is a happy person in his own way. He doesn't know he's disabled. For him this is normal,” said his mother.
“For that, I’m happy, too.”