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Metairie family overwhelmed by community support as their two young boys face terminal disorder [Video]

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Community Building and Management

NEW ORLEANS (WVUE) – A local family has been overwhelmed by community support after sharing their journey with two young boys living with a rare and terminal genetic disorder.

They say the kindness and generosity they’ve received have kept their spirits high and brought them an unexpected blessing—a new baby on the way.

The Cheramie family’s story has captured hearts far and wide.

“It really has been amazing and life-changing,” said Alexi Cheramie.

Alexi and her husband, Cruise, are parents to Kai, 3, and Ura, 18 months. Both boys were diagnosed with infantile neuroaxonal dystrophy (INAD), a rare genetic disorder that affects the nervous system. The condition causes a progressive loss of muscle control and vision, with symptoms worsening over time.

Metairie couple copes with rare genetic disorder in sons(Meg Gatto)

Earlier this year, FOX 8 shared the family’s story. Since then, donations have poured in from the community.

“Kai is way happier than he used to be, for sure,” said Cruise.

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