'The best blessing': The child has cystic fibrosis and cerebral palsy. His family needs a home




  • In Health
  • 2022-11-25 11:00:00Z
  • By Miami Herald

A baby nursery in a relative's South Florida home has become the living quarters of 13-year-old José Andino Díaz and his family, ever since his parents carried him in their arms from his native Nicaragua to the U.S.-Mexico border over a year ago.

His father sleeps on a small mattress on the tile floor. José, his mother and 20-year-old sister, Nora, share a larger bed crowded with nebulizers and medicine. Bookshelves store diapers and the liquid meals he receives through his feeding tube. Plastic bags hang from an IV bag.

"That would be the most wonderful thing in the world, to be able to provide that well-being for our son, our children," said Oscar Andino, the youth's father.

The family hopes to find a two-bedroom, wheelchair-accessible home close to Jackson Memorial Hospital so they can be near José's doctors for daily care and emergencies. Having a home of their own would mean being able to have space for the orthopedic bed and bathing chair that José needs for daily living.

"That would be the best blessing the Lord could give," said Erika Díaz, José's mother. "Who doesn't want to live in a home?"

José was born with cerebral palsy, which affects his movement and muscle tone. He cannot speak or walk and is dependent on his parents for self care. After the family arrived in Florida last year, doctors at the University of Miami diagnosed him with cystic fibrosis, a congenital, life-threatening lung condition that causes persistent coughing and lung infections.

José's parents described their son as an affectionate, happy and cheerful boy who laughs often when he is healthy. He enjoys watching cartoons on TV and using a tablet, and he lights up when his sister or father comes home. His favorite musician is Leo Dan from Argentina, although his father, laughing, said he didn't know why. At night, he reaches over to caress his mother's face. Despite his physical limitations, he always gets closer to cuddle.

"He is our joy," she said.

Sherri Kelly, a social worker with the University of Miami Cystic Fibrosis program, said his mother did an "excellent job" of bringing him to his rotation of appointments with specialists. She said there was "no one more deserving" to receive help from Wish Book readers as the family works to secure long-term housing.

"It's a wonderful family that needs our help," she said. "Every little bit will help them right now."

José came into the world early, after a 6 1/2-month-long pregnancy, in August 2009. But when he turned 1 year old, he wasn't walking, or hitting other developmental milestones. His parents took him to the doctor and learned he had cerebral palsy.

Díaz, a former social worker who assisted young rape survivors and sex workers, left her job to take care of her son when he turned 3. Life revolved around doctor appointments and therapy, which helped José hold his head up and strengthen his muscles. He rode horses through a local foundation's program for children with disabilities.

José Andino Díaz, 13, with his mother, Erika Díaz, at a relative’s home in West Miami on Friday, Nov.
José Andino Díaz, 13, with his mother, Erika Díaz, at a relative’s home in West Miami on Friday, Nov.  

A block from the Andino house, pro-government Sandinistas of their city assembled. They held marches and brawled with dissenters who opposed President Daniel Ortega's government. From their house, the family could hear the rumble of fights and the pop of gunshots. The smell of gas bombs wafted through the streets.

"We would hide under the beds, we didn't go to the yard because of the gas. That gas could further damage our child's lungs," said Oscar Andino.

The Sandinistas threatened the family for not showing public support for Ortega, said the family; the father was chased out of his government job as a security guard in a water management plant. The family decided to leave the only home they had ever known for the United States.

Long journey from Nicaragua

They took off last year on foot and by bus, first going north to Honduras, crossing into El Salvador, and stopping in Guatemala before arriving in Mexico. Díaz and her husband would hold their son on their laps during the long bus rides. His health was a barometer used to decide how many days to stay in each country.

"We rested until we saw he was a little better. Then we continued," she said.

 

One month later, the family arrived in the Mexican border town of Reynosa, where the water reached over Erika Díaz's waist as the family waded through the frigid and furious Rio Grande to the town of Hidalgo, Texas.

Her husband crossed ahead of her, their son in his arms. But as they waded further into the Rio Grande, the currents strengthened and the large boulders became slippery. José sobbed as his father fell into the furious waters. Nearby fishermen screamed to Díaz, her daughter and husband to make a human chain to overcome the undertow. They reached the riverbank, where they stumbled again as they held on to trees.

"We felt death," said Erika Díaz. "I knew that I was risking the lives of my children and ours, but we always had the faith that the Lord was going to protect us."

U.S. authorities detained them and offered dry clothes for José. Some days later, after immigration processing, the family flew to Florida, where relatives welcomed them into their Miami home. Nora came later, after spending over two weeks in ICE detention.

José Andino Díaz, 13, came from Nicaragua with his parents and sister.
José Andino Díaz, 13, came from Nicaragua with his parents and sister.  

Over a year later, José uses a new wheelchair that replaced the one he left behind. He receives language and motor therapy and attends medical daycare. His previously undiagnosed cystic fibrosis, which had him coughing day and night, is now under control.

Díaz wakes up at 5 a.m. to give him medicine so he can tolerate his first feeding-tube meal of the day. At 8 a.m., she gives him four anti-seizure medications and readies him for daycare, a respite for his mother to focus on errands and herself for a few hours a day. José comes back from the hospital in the afternoon, and his mother administers food and medication until about midnight.

The medical challenges persist: The young teen fractured his leg during a severe seizure and spent a month hospitalized after tearing his feeding tube.

"As the doctors say, if we were in Nicaragua, he might not be here anymore," she said.

Díaz has dreams for her family's new life in a new country. She hopes they will be able to secure asylum. She aspires to return to her career in social work if the opportunity arises and that her daughter goes back to school to finish her agricultural engineering degree. And she yearns for her son to be able to walk one day, which she says would be a "miracle."

But for now, having a home they can call their own would be more than enough.

How to help

To help this Wish Book nominee and the more than 100 other nominees who are in need this year:

To donate, use the coupon found in the newspaper or pay securely online through www.MiamiHerald.com/wishbook

For more information, call 305-376-2906 or emailWishbook@MiamiHerald.com

The most requested items are often laptops and tablets for school, furniture, and accessible vans

Read all Wish Book stories on www.MiamiHerald.com/wishbook

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