Alfia Maha

What makes Alfia Xtraordinary to you?

When my son was diagnosed, I did not just grieve. I picked up my needle and thread. As a textile artist trained in the centuries-old Bengali folk tradition of Nakshi Kantha embroidery, I have spent my career making invisible experiences visible through art. After his diagnosis, I turned that practice toward the experience of Fragile X caregiving — the exhaustion, the love, the isolation, and the fierce quiet strength that defines life as a caregiver.

My ongoing body of work, Complexity of Motherhood, uses textile and mixed media art to give visual language to what immigrant caregivers of children with rare genetic conditions feel but rarely have space to express. This work has been exhibited in the United States, permanently acquired by a university museum, and accepted into the College Art Association’s annual conference as a scholarly paper.

As a premutation carrier, I also carry this story in my own body. I know what it means to receive a genetic diagnosis that changes how you understand your past and your future. I want other immigrant families — especially those from South Asian communities where Fragile X is almost completely unknown — to know that they are not alone, that their story matters, and that art can be a form of healing.

Special Facts

• I love making art and creating crafts, which gives me pleasure
• I love singing and dancing
• I spend time with my friends and family, which calms me down

How has the NFXF helped you?

NFXF gave me the knowledge to understand what was happening in my own genetics and my son’s diagnosis. For an immigrant family navigating an unfamiliar healthcare system in a new country, having a trusted, comprehensive resource like NFXF has been invaluable. NFXF showed me that there is a whole community of people who understand this journey, and that has made all the difference