"Every day, Nguyen Thi Thuy Duong, 38, and her husband wake up at 2 a.m. to mix flour and prepare cakes," she shared, detailing their daily routine in a rented room on An Ha street, Tan Vinh Loc commune, TP HCM.

By 4 a.m., she and her husband, Ho Hoang Ngoc, 42, push their cart to a street corner 10 minutes from their home to sell fried bananas. At 8 a.m., Duong returns to their rented room to care for her son, Tan Loc, 10, assisting him with hygiene and meals. "The disease has left my son with full-body disabilities; he cannot speak and can only lie in one place," Duong shared.

Nguyen Thi Thuy Duong next to her fried banana cart at 4 a.m. on 26/6, on An Ha street, Tan Vinh Loc commune. *Photo: Hoang Ngoc*

Tan Loc is their second son. At four months old, he began showing signs of a gradually enlarging forehead and head, a weak airway, and continuous fever. His parents brought him from Can Tho to TP HCM for treatment. During that time, he would spend half a month in the hospital, only to return for emergency care one or two days after being discharged.

When Tan Loc was over two years old, blood test results from abroad confirmed he had Hunter syndrome, a rare genetic metabolic disorder. This condition arises from the body's deficiency in enzymes that break down sugar molecules. The resulting accumulation of substances damages internal organs, leading to bone deformities, an enlarged head, limb contractures, and respiratory failure.

Doctors informed them the annual medication cost would be 7-8 billion VND. With no savings, the couple decided to leave their hometown and move to TP HCM to facilitate their son's treatment.

Tan Loc was one of the first cases of this syndrome identified in the Southern region. While awaiting sponsored medication, he received symptomatic treatment. The process of accessing the medication proved challenging. At one point, medicine arrived but had to be returned due to incomplete procedures. To increase their chances, doctors prepared two sets of documents, sending them concurrently to Ha Noi and TP HCM. Fortunately, when Tan Loc was nearly four years old, the application in TP HCM was approved.

Every monday, the family spends 700,000-800,000 VND to rent a car for Tan Loc's chemotherapy sessions. The current sponsored medication prolongs his life and softens his skin and muscles, but his limbs have already contracted, and he faces a risk of blindness. Tan Loc requires frequent diaper changes, using about 50 diapers each week.

Nguyen Thi Thuy Duong feeds her 10-year-old son, Tan Loc, breakfast on 26/6. *Photo: Hoang Ngoc*

The medical expenses depleted the family's savings. Hoang Ngoc stopped working as a bricklayer due to a herniated disc, switching to picking wild vegetables, catching crabs and snails, and selling popcorn. Duong took on making votive offerings and sewing work at home to constantly care for her son. For the past two years, the couple has relied on selling fried banana cakes as their primary income.

The relentless pressure of earning a living has severely impacted the couple's health. Over two years ago, Duong developed an arrhythmia, forcing her to sell her sewing machine to cover hospital fees. While Duong was hospitalized, Hoang Ngoc (who has diabetes and has lost vision in his left eye) tore a ligament in his left leg but endured the pain to care for their son.

Their 16-year-old eldest daughter had to drop out of high school to pursue vocational training in hairdressing and nail care. However, she had to quit when informed she needed 5 million VND for equipment, a sum the family could not afford.

Their difficulties continue as the landlord announced they would reclaim their rented room at the end of this month. Hoang Ngoc is now searching for new accommodation with a budget of about 2 million VND per month.

Supporting pediatric patients with rare diseases and difficult circumstances is an activity within the Mat Troi Hy Vong program, implemented by Quy Hy Vong. Each community contribution offers another ray of hope to the nation's future generation. Readers can support the program here:

Program name: Ten cua ban - Benh hiem Mat troi Hy vong

Program ID: 22966

*Bao Nhien*