Fresno child battles rare form of Spinal Muscular Atrophy

FRESNO Calif. (KFSN) -- The living room of Zaira De La Cruz's home has been turned into a makeshift hospital room.

About seven months after her daughter was born, Zoey was diagnosed with the James type of Spinal Muscular Atrophy -- rare and severe neuromuscular disorder.

"They tell me that her life expectancy is two years old. It's hard, even up to even right now. It's hard to like even verbalize it," explained De La Cruz. "How can you tell me that her life expectancy is short? That there's no cure? There's nothing that I can do? That's all out of my hands."

Zoey will turn two years old in March.

It's all the equipment in her room that gives her that extra support to make sure her lungs are working.

"There's no medicine that she's taking to keep strong," said De La Cruz. "This is a progressive disease that will take her life little by little until her lung muscles will stop working completely."

The disease has already weakened Zoey's muscles. Her arms and legs appear limp, which means Zoey will likely be unable to walk. Zaira is also unsure if Zoey will be able to talk.

"Time will tell whether or not she will be able to verbalize. She tries to copy some words, and we do understand them," she said. "We don't know if she will be able to talk."

Despite her condition, Zoey is full of personality. She loves to make people laugh.

"She's very smart," De La Cruz shared. "So this is something that affects her body, her muscles, but her brain -- I mean, it works like any other kid her age."

Zoey's condition requires weekly appointments at Valley Children's in Madera, and sometimes, visits to the emergency room require months-long stays.

Her mom has set up a GoFundMe to help improve Zoey's quality of life.

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