LYNDHURST, N.J.–A rare disease that causes abnormalities throughout all of her organs leaves Gianna Cruz of Lyndhurst fighting for her life every day.
But anyone looking at the Jefferson School seventh grader's face can see it tells a different story.
Gianna, 13, is always smiling – even after 20 surgeries for the incurable DiGeorge Syndrome, also known as 22q11.2 Deletion Syndrome .
"It doesn’t matter what she goes through," Gianna's mother, Anna Rizzo, said, wiping away tears. "It doesn’t matter the challenge. She is so full of life. She is so full of joy."
Dancing, movies, music, cheerleading, singing and her Boston Terrier, Dexter, are among the things Gianna says make her smile. She lets out an adorable laugh when talking and thinking about her favorite hobbies.
Her life began with over five months in a neonatal intensive care unit. The next year and a half, she was under 24-hour care and had a trachea in her throat.
"She's come out a fighter and hasn't quit since," said Rizzo, 40.
Gianna cannot swallow food or drinks adaquetely and needs a gastrostomy tube – "g-tube" – for hydration and nutrition.
She was born with a tethered cord, scoliosis and six toes on each foot. She's catheterized. She's deaf in one ear, has asthma, seizures, anxiety, ADD, and Tourette's Syndrome. She's also cognitively delayed.
Mere survival requires tremendous energy and the youth burns so many calories, she weighs around 50 pounds while standing at 4-feet, 2-inches.
"She should live each day of her life understanding that she's different and she should embrace that," said Rizzo, who stays home to care for her daughter.
"Normal is boring," Rizzo added, as she and Gianna laughed.
Gianna joined the Lyndhurst Junior Football cheerleading squad, which includes "typical" – as Rizzo put it – or "general education" students through Bernadette Montillo's blessing.
Gianna said she enjoys the halftime routine.
"I have stunts, tumbling and jumps," she said with a note of pride.
Watching the football team hit the field and run through a handmade sign gives her a thrill.
After the first pep rally, "She said, 'I felt like I fit in with the big girls,'" Rizzo said.
There's no guarantee she’ll be able to walk later in life. "So while she can and while she has the spirit the will and the strength," Rizzo said, "she’s going to do anything and everything she can.”
Gianna's father, Dennis Cruz, and stepfather, Paul Ciccotti, are part of what Rizzo calls "Team G." Rizzo also volunteers with the Elmwood Park-based Let Them Be Little X2 Foundation .
Two years ago, Rizzo created a Facebook page " Gianna's Journey " where both she and her daughter interact with friends, family and supporters, and post pictures and updates.
"She began to notice her differences, that her body works differently," Rizzo said. "She shows social immaturity and she's quite smaller than her peers."
Through the page, "we wanted to put it out that different is okay."
There's a sign above Gianna's bed that reads "Different is beautiful," serving as a reminder for her every day,
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