Just six weeks after birth, baby Gao began to show signs of an extremely rare disease. Defying hardship, her family has turned their journey into one of love and resilience, inspiring millions across social media.

The journey of embracing imperfection

The home of Pham Thi Mai’s family in Ho Chi Minh City is always filled with laughter, much of it shared through popular videos online. These short clips document the life of Vietnam’s most extraordinary child – baby Gao.

Born in July 2021 amid the height of Ho Chi Minh City’s Covid-19 lockdown, Nguyen Thai An Khue, nicknamed Gao, is the second daughter of Mai and her husband. She arrived healthy, weighing 3.2 kilograms and measuring 52 centimeters long.

In her early days, Gao showed no abnormalities and was a calm baby. However, at just six weeks old, Mai noticed her daughter wasn’t gaining weight.

Concerned, the young mother took Gao to a private clinic. The doctor observed increased muscle tone in the legs, possibly due to brain damage.

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Mai’s family. Photo courtesy of family.

The words “brain damage” left Mai in shock. Despite following medical guidance, further visits only heightened the family’s worry. Gao wasn’t developing like other babies, yet test results revealed nothing conclusive.

At another clinic, a doctor suspected a genetic issue and referred the family to the Institute of Genetics for testing.

The results devastated Mai and her husband: Gao had Hutchinson-Gilford Progeria Syndrome (HGPS), a rare genetic disorder caused by a mutation on chromosome 1. The condition causes accelerated aging in children, with most patients living only to around 14 or 15 years old.

Even more extraordinary, Gao showed symptoms unusually early. While most cases develop signs around 18 to 24 months, Gao’s symptoms began just weeks after birth. Her hair fell out, the skin on her scalp thinned until blood vessels were visible, her head became abnormally large, her ears began to fold in, and her joints became stiff.

The diagnosis plunged Mai into despair. She fell into depression, often consumed by dark thoughts and contemplating ending her life. Holding Gao on their apartment balcony, she was tormented by hopelessness.

“I can’t raise this child,” she sobbed. At one point, she considered sending Gao to live in a monastery. Her husband, Kien, stayed by her side, taking care of the family, but Mai was overwhelmed by guilt and grief over what had seemed like a normal pregnancy with no warning signs.

Seeing her daughter struggle, Mai’s mother offered to take Gao back to the countryside to give Mai time to recover. That Lunar New Year, Kien took their children north while Mai stayed behind in Saigon. Alone, she confronted her grief and slowly realized what truly mattered. Her yearning for a perfect child had caused her to reject the precious one she had.

Recognizing that her time with Gao might be limited, Mai resolved to change her mindset: “Just being together is enough.”

Right before Tet, she packed her bags and flew north to reunite with her family. Seeing her husband and children smiling, Mai broke down in tears, regretting the darkness she had let consume her. That holiday was filled with laughter, and she cherished every moment holding her little girl close.

“Just being together is enough”

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Baby Gao with her mother and grandmother. Photo courtesy of family.

That’s what Mai told her husband. Gao has grown up surrounded by love.

Though she occasionally suffers from pain, sleeplessness, and irritability, Gao is always met with her mother’s gentle care, her father’s patience, and affection from her older sister Tep. She develops more slowly than her peers, still unable to walk without holding onto furniture or the help of adults. But she can crawl, stand, and speak short, babbled phrases that melt her family’s hearts.

Mai regularly takes Gao outdoors for fresh air and sunlight, no longer concerned about curious glances. To her, Gao is everything.

Overcoming pain and stigma, Mai and Kien decided to share Gao’s story through media and social platforms. They hope to raise awareness about progeria while offering inspiration through their emotional journey. Everyday videos of Gao are posted to their page “Tep Gao Family,” which has over 500,000 followers and has received widespread support from other parents.

“With her innocent smile, Gao has taught our whole family to cherish every moment and live fully in the present,” Mai said.

What is progeria?

Progeria is a progressive genetic disorder that causes rapid aging beginning in early childhood. It is extremely rare – since its discovery in 1886, only about 130 cases have been documented worldwide.

Children with progeria, or Hutchinson-Gilford Progeria Syndrome (HGPS), typically show no signs at birth. Symptoms such as skin changes and hair loss begin appearing around the age of one.

There is currently no cure. However, regular monitoring and cardiovascular care can help manage the condition. Some children undergo coronary bypass or angioplasty procedures to slow the progression of heart disease.

Phuong Thuy