Like many parents suddenly introduced to a rare condition, she found herself researching, reading medical information, and asking specialists countless questions. From her understanding, Moyamoya disease affects the blood vessels supplying the brain.

“The brain arteries become narrow and eventually block the blood vessels from supplying blood and oxygen to the brain. New blood vessels then form, and they look like smoke.”

The word “Moyamoya” is a Japanese term meaning “a puff of smoke,” describing the appearance of these tiny blood vessels on brain scans.

For families, however, the condition is far more than a medical term. It can mean strokes, developmental challenges, therapy, uncertainty, and ongoing monitoring.

Learning to Become Her Child’s Biggest Advocate

Through it all, one lesson has remained constant. “Do not take anything lightly when it comes to your child.”

She encourages parents to trust their instincts and seek professional medical advice whenever something doesn’t seem right.

“If there’s something you don’t understand about your child’s health, don’t diagnose it yourself. Consult a doctor.”

The experience has transformed her as a mother.

“I’ve learned patience, accountability, love, support, and responsibility.”

Yet beyond the medical appointments and therapy sessions, life at home remains beautifully ordinary. Zano spends her days playing with toys, carrying around her beloved “Pupu,” and filling the house with laughter. Those everyday moments, her mother says, are the ones she treasures most.

The Emotional Reality Behind the Diagnosis

Watching your child experience a medical crisis leaves a lasting impact. For Valencia, the emotional toll was overwhelming.

“I became forgetful. I was angry. I couldn’t understand why she couldn’t do certain things independently.”

Much of her energy became focused on being by her daughter’s side.

“I just wanted to be with my baby girl. ICU or not.”

While fear and frustration were part of the journey, faith became her anchor.

“I’ve always believed in God, but I became much closer to Him through this experience.”

Support from family members, cousins, medical professionals, and particularly Dr Sarah Berkenfeld also helped her navigate some of the darkest moments.

The Financial Burden Families Often Carry Alone

For many families living with rare medical conditions, treatment extends far beyond hospital walls. Therapies, transport, consultations, and ongoing care come at a high cost.

“It is very expensive,” she says.

Even now, monthly expenses related to Zano’s care can reach between R4,000 and R4,500. The financial pressure is a reality many caregivers quietly carry while focusing on their child’s recovery.

Celebrating Every Victory

Despite the challenges, there is plenty worth celebrating.

“She is a fighter,” her mother says proudly.

One of the most encouraging developments has been seeing Zano’s speech improve. She is also now able to dress and undress herself independently, a milestone that means far more than many people realise. And while her mother beams with pride over every achievement, she laughs when talking about one of Zano’s greatest strengths.

“She’s very technology smart.”

It’s a reminder that children are never defined by their diagnosis. They are defined by their personalities, their dreams, their resilience, and their ability to surprise us.

Creating Awareness for Moyamoya Disease

One reason she chose to share her story is simple.

“I don’t want to see any parent go through what I’ve gone through.”

She hopes that greater awareness of Moyamoya disease will encourage parents to seek answers when something doesn’t seem right and to advocate fiercely for their children.

Her advice to families walking similar journeys is heartfelt.

“Be patient. Never give up on your child. Don’t allow anyone to discourage you. Keep striving for your child.”