The coastal family faces a rare genetic condition

Roya Malaekeh, a mother of three from El Granada, never lets her thoughts wander too far into the future. After her daughter Shadi Bozorginia, who turns 7 this month, was diagnosed with the rare genetic condition of Schaaf-Yang syndrome, Malaekeh has learned to take days and hours as they come.

I’m just looking to maybe look at next week, Malaekeh said. If I go to next year or beyond, there’s a lot more to do that I haven’t done yet and it’s really hard to think about.

Go back home

Roya Malaekeh (right) and son Darian Bozorginia, 3, greet Shadi Bozorginia, 6, as she is being helped off the school bus after a day at school. May 31, 2023. Anna Hoch-Kenney | Revision


Roya works with Darian on using a communication board while Shadi plays with a toy. May 31, 2023. Anna Hoch-Kenney | Revision

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