Born Without Sight, Raised Without Sound: A Teenager's Life of Constant Care

For 14 years, the daily routine for Khalidah Mohamed Aris and her husband has remained unchanged, mirroring the first day they welcomed their eldest child. Their "baby," now a teenager, still requires constant support for every aspect of life.

A'isyah Hanna Fauzi was born without eyeballs and later diagnosed as completely deaf. Her parents first grappled with the diagnosis of bilateral congenital anophthalmia when she was four months old. The emotional blow intensified when, at nine months, she was confirmed to be profoundly deaf.

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At first, we still hoped that even if A'isyah couldn't see, at least she could hear our voices. But when the doctor confirmed she was also completely deaf, we were devastated. The trials came one after another.

"At first, we still hoped that even if A'isyah couldn't see, at least she could hear our voices," Khalidah, 40, recounted. "But when the doctor confirmed she was also completely deaf, we were devastated. The trials came one after another."

Compounding these challenges, A'isyah also experiences agenesis of the corpus callosum and developmental delays, significantly impacting her growth compared to peers. The family's life became a cycle of hospital appointments, therapy sessions, and searching for information on deafblindness, a topic with limited resources at the time.

Caring for A'isyah involves a level of dedication usually reserved for infants. "Even though she is 14, I still have to feed her, carry her to the bathroom, dress her, and change her diapers," Khalidah explained. "A'isyah still hasn't learned to chew food or drink from a cup on her own. I am caring for a teenager, but her daily routine is the same as caring for a baby."

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Even though she is 14, I still have to feed her, carry her to the bathroom, dress her, and change her diapers. A'isyah still hasn't learned to chew food or drink from a cup on her own. I am caring for a teenager, but her daily routine is the same as caring for a baby.

The family's commitment has led her father to quit his job to provide full-time care, given A'isyah's unpredictable sleep patterns and frequent specialist appointments. The greatest struggle, Khalidah admits, is not physical exhaustion but the difficulty in understanding her daughter's needs. A'isyah sometimes cries or laughs without apparent reason, leaving her parents unable to decipher her emotions.

"There are times she throws a tantrum because she might want something, but we cannot understand her," Khalidah said, her heart aching. "As a mother, my heart breaks because I know she is trying to tell me something, but I am unable to understand what she wants to convey."

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There are times she throws a tantrum because she might want something, but we cannot understand her. As a mother, my heart breaks because I know she is trying to tell me something, but I am unable to understand what she wants to convey.