Mother seeks help for infant son battling rare genetic disease

Nguyen Thi Ha, 27, from Dong Loc Commune in Ha Tinh Province, is seeking financial assistance to help cover treatment costs for her young son, who is suffering from spinal muscular atrophy (SMA) type 1, a rare and life-threatening genetic disorder.

According to Ha, her son, Nguyen Gia Hung, was born healthy in October 2025.

However, when he was three months old, she noticed that he remained largely motionless and showed little movement in his arms and legs. Medical examinations later confirmed that he had SMA type 1, the most severe form of the disease, in which motor neurons progressively deteriorate, leading to muscle weakness and loss of movement.

Since the diagnosis, Gia Hung's condition has worsened rapidly. He has lost control of his neck muscles and is unable to hold up his head, sit unaided, grasp objects, roll over or crawl like other children of his age.

Instead, his body has become increasingly weak and limp. He struggles to feed, cries faintly and frequently suffers from severe respiratory complications.

The family's distress deepened when they learned about the cost of treatment. Zolgensma, a gene-replacement therapy widely regarded as one of the world's most expensive medicines, costs around VND 50 billion (USD 1.92 million) for a single dose, far beyond the family's financial means.

Amid growing desperation, Ha learned of an early-access experimental treatment programme for children with SMA currently being conducted in Indonesia. However, participation would still require the family to cover related expenses estimated at around VND 3 billion (USD 115,000).

Over recent months, the couple have borrowed money, sold valuable possessions and exhausted every available source of funding. Even so, the amount they have managed to raise remains only a fraction of what is needed.

"Every time I look into my son's innocent eyes and see him trying to smile despite being too weak to lift his arms or legs, my heart breaks," Ha said. "I have not had a peaceful night's sleep. All I can think about is how to save my child."

Ha now cares for her son around the clock. Daily living expenses, milk, diapers, medication and support for elderly parents depend largely on remittances sent home by her husband, who is working overseas.

"In these extremely difficult circumstances, I sincerely hope that readers and charitable donors can help my son gain access to treatment, extend his life and give him a chance to grow up like other children," she said.

Nguyen Dai Dong, vice chairman of the People's Committee of Dong Loc Commune, confirmed that Ha's family is facing severe financial hardship. The couple do not own a home, while their son requires costly treatment for a serious illness.

Through local authorities, Dong appealed to donors and charitable organisations to support the family and help provide Gia Hung with a chance to receive potentially life-saving treatment.