"We waited three years after marriage to welcome our child. Never did we expect her to be diagnosed with a rare genetic disease. Gene therapy is her only hope. Please, we beg for your help to save our daughter!"

Hee Gia Yee, an 18-month-old girl from Taiping, Perak, developed normally during pregnancy and early infancy, even attempting to roll over and lift her head. However, at 8 months old, her parents noticed she could only roll halfway before getting stuck and could not lift her head. After multiple consultations, she was diagnosed with Spinal Muscular Atrophy (SMA Type 2), a rare genetic disease that leads to progressive muscle weakness, atrophy, and loss of mobility.

Today, Gia Yee is unable to roll over, lift her head, and her limbs are growing weaker. Doctors stressed that she must undergo gene therapy before the age of 2. If delayed, her muscles will continue to waste away until she completely loses mobility at which point, even medication will no longer be effective.

【For SMA children, time is life. Every single day of delay worsens her condition】

At the beginning, doctors suspected thyroid dysfunction as the cause of her symptoms. Blood tests showed abnormal thyroid levels, and she was given medication. Two months later, her thyroid levels returned to normal, yet her motor abilities showed no improvement.

Further examinations revealed hand tremors and weak muscle tone, prompting doctors to suspect SMA. Genetic testing was recommended, and eventually, at her parents’ expense, the diagnosis of SMA Type 2 was confirmed.

The family then learned about an advanced gene therapy treatment called Vesemnogene Lantuparvovec. Unlike conventional medicine, this therapy requires only a single injection and can significantly improve quality of life.

The cost of this treatment, however, is USD 125,000 (approximately RM550,000) a sum far beyond the means of her parents, who have already depleted their savings.

“We have no other option but to place our hopes on this gene therapy. We are willing to bring our child to Tzu Chi Hospital in Indonesia for treatment. All we hope for is that she can one day stand, walk, and live a healthy life like other children.”

Her father, Hee Choon Keat (41), is a small food stall vendor selling bak kut teh, earning around RM6,000 monthly. Her mother, Tran Thi Yen (26), is from Vietnam. Once managing to sustain their family while paying off their home loan, the couple now faces declining business and reduced income, barely making ends meet. With mounting medical and therapy costs, they are left with no means to cope.

After a thorough home assessment, One Hope Charity & Welfare has approved this fundraising campaign. An immediate allocation of RM20,000 from the Emergency Medical & Contingency Fund has been made to support Gia Yee.

For any inquiries, please contact our hotline 04-539 9212 / 016-4192 192 / 019-2322 192 / 018-911 4192.