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Autistic 6-year-old who fights dangerous tumors is grandma's 'reason for living'

Miami Herald - 11/28/2019

Nov. 28--Six-year-old David Anaya never tires of the tune of "Let it Go" from Disney's "Frozen," no matter how many times he listens. His face lights up as soon as the music starts. He knows the dance and the words, and climbs on his tippy-toes for the high notes.

On a recent day at school, a fellow student dressed up as Elsa. David stared in disbelief, finally gaining the courage to go up and introduce himself.

That David is dancing and attending school is a blessing, in the words of his grandmother, Maria Alfonso, 63.

Blue binders sit stacked in the corner of Alfonso's Kendall dining room on top of a set of plastic drawers. She lugs them onto the table to review all she and David have been through, and all that lies ahead.

In one, the business cards of each of David's doctors are neatly placed in three hole-punched plastic pages: the oncologist, the neurologist, the pediatrician, the speech therapist, the behavioral therapist, the head doctor. Another holds blood reports from each Thursday chemotherapy session spanning 13 months. In another, MRI scans on DVDs with dates for David's next appointments.

Alfonso never imagined her life would be this way. She immigrated to Miami from Cuba, worked as a cook, and together with her husband raised three children. Then three years ago, everything changed when her oldest daughter died of a heart attack at 35 years old, leaving Alfonso as the main caregiver of her grandson, David, then just 3.

A few months after her daughter's funeral, birthmark-like blemishes started to appear on David's skin. Worried, Alfonso took him to the doctor. The marks were a symptom of neurofibromatosis, a genetic disorder that causes tumors, sometimes cancerous, to grow on nerves. David had a cancerous tumor on his optic nerve. That same month, another diagnosis arrived. David is autistic.

"I didn't have time to cry over the pain," Alfonso said of her daughter's death. "We went from hospital to hospital, looking for therapists here and there. I don't wish this for anyone, it's really hard."

The tumor's location on David's optic nerve makes it impossible to remove via surgery. For 13 months, Alfonso and David traveled to Nicklaus Children's Hospital once a week for chemotherapy treatment. Now, David has reached an important milestone. An MRI this year showed the chemotherapy shrank his tumor considerably. Another MRI in March will show whether his progress has held. Still, neurofibromatosis puts him at risk of more tumors throughout his life.

For now, every day at 7:45 a.m., the pair leaves for prekindergarten at Gilbert Porter Elementary School, where David attends a class designed specially for autistic kids. At 1:45 p.m., school is over, and therapy begins. David remains at school working with behavioral and speech therapists until 5 p.m. Alfonso relies on her adult children to help her pay for the treatment.

Noemi Garcia, a behavioral therapist, has been working with David for a year and has seen him improve dramatically. He makes eye contact, requests toys instead of grabbing them, and waits his turn. After almost every exercise, he has one question for Noemi: "Is Abuela happy?" It's his constant concern.

Alfonso smiles when she hears this. She never expected to take on the role of mother again. She scrolls through photos on her phone of her daughter with David.

"When he's here, I have to swallow my problems," she said about her grief. "I've learned to live like this."

Part of her new role is making sure David has his homework and projects done for school. Much of his homework has to be done on the computer through a system called iReady, but Alfonso doesn't have a computer at home. When David has homework, he has to wait until the weekend to go to his uncle's house to complete it. But it's difficult for him to stay seated and concentrating for long periods of time.

On a recent Wednesday afternoon, Alfonso chatted with Garcia about David's progress as he played nearby with Legos. As Alfonso and David walked out to the car, he sang the "Let it Go" tune, pausing to say goodbye and wave to the security guard at the front desk.

"He's my reason for living," Alfonso said.

MIAMI HERALD WISHBOOK

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 wishbook@miamiherald.com. (The most requested items are often laptops and tablets for school, furniture, and accessible vans.) Read more at MiamiHerald.com/wishbook.

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