Marisa: A little girl’s fight to live

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Marisa Carney has been diagnosed with rapid-onset obesity with hypothalamic dysfunction, hypoventilation and autonomic dysregulation, or ROHHAD, an extremely rare childhood disorder that is difficult to diagnose and treat. To chronicle Marisa’s struggle, reporter Candice Ferrette and photographer Alejandra Villa have followed the Carney family since March 2011.

Her fight to live

Her fight to live

Marisa is one of only 75 children worldwide to be diagnosed with ROHHAD.

Newsday / Alejandra Villa

Marisa’s next steps

Marisa’s next steps

Marisa is taking back her life step by step — first ballet, then kindergarten.

Newsday / Alejandra Villa

Teen offers hope

Teen offers hope

Brigid Cooleen, 15, is an honor student despite being diagnosed with ROHHAD.

Newsday / Alejandra Villa

A mother’s love

A mother’s love

A seizure at age 2 left Trevor Ward, 20, reliant on his family for care.

Newsday / Alejandra Villa

Young ROHHAD patients

Young ROHHAD patients

Trevor Ward and Brigid Cooleen live with ROHHAD.

Newsday / Alejandra Villa

Off to Chicago

Off to Chicago

We follow Marisa Carney to a Chicago hospital for another series of tests.

Newsday / Alejandra Villa

Family, friends fundraise

Family, friends fundraise

As Marisa fights ROHHAD, the push is on to help fund research.

Newsday / Alejandra Villa

About ROHHAD

About ROHHAD

ROHHAD is an extremely rare childhood disorder that is difficult to diagnose and treat.

Newsday / Alejandra Villa

How to help

How to help

The Carney family and friends have formed a nonprofit to raise awareness and money for research.

Newsday / Alejandra Villa