Eight-year-old Gia Linh, who endured three years reliant on an oxygen tank, now finds her life sustained by donated medication. This crucial support, valued at four billion dong annually, allows her to manage Gaucher disease, a rare genetic disorder.
Gia Linh, the granddaughter of Nguyen Thi Huong, from Binh Anh commune, Gia Lai province, was born in 4/2018. For the first seven months of her life, she developed normally. From the 8th month, the child showed signs of developmental delay, frequent vomiting, and abdominal distension. Both district and provincial hospitals diagnosed her with malnutrition and anemia.
In 7/2020, Huong took her grandchild to Children's Hospital 1, TP HCM. After two months of biochemical tests and gene analysis, doctors concluded Gia Linh had Gaucher disease. This rare genetic metabolic disorder belongs to the lysosomal storage disease group. Enzyme deficiency prevents the body from breaking down fats, leading to fat accumulation that causes liver and spleen enlargement. At that time, the child's abdomen was distended, making it difficult to walk and causing frequent falls.
"Our family felt helpless knowing there was no common cure for this disease in Vietnam, and the costs were beyond our financial means," Huong stated. The only solution doctors offered was to wait for the hospital to secure donated medication.
 |
Huong and her granddaughter Gia Linh at their home in Binh Anh commune, Gia Lai province in 4/2026. *Courtesy of family*. |
More than three years after the diagnosis, Gia Linh's life became dependent on an oxygen tank. She was mainly treated at the hospital and was two times in critical condition due to pneumonia. Her parents divorced, and her maternal grandparents' family took on her care. Her mother quit her job to stay at the hospital. Her maternal grandfather left his fields fallow to assist from outside the hospital. Huong used her teacher's salary to cover her grandchild's medical expenses.
Whenever she could make time, she would take a bus to the hospital. During sleepless nights caring for her grandchild, the teacher read medical documents. Once, after reading an article about two children in the North with a similar illness who received donated medication, she found renewed hope.
On the morning of 20/11/2023, doctors announced the hospital had secured donated medication. Three days later, Gia Linh received her first dose of specialized treatment. The treatment brought about a change in her physical condition. She was able to leave the hospital and no longer needed the oxygen tank.
After more than two years of receiving medication, the abdominal distension gradually subsided. Gia Linh became mobile, showed good cognitive function, and began to sing. Currently, she weighs 17 kg. The cost for each medication infusion is over 150 million dong, totaling nearly 4 billion dong annually to sustain her life.
Having retired last year, Huong took over caring for her grandchild so Gia Linh's mother could work remotely. Every two weeks, the two of them take a 13-hour bus ride to TP HCM for treatment. Due to her missing teeth, Gia Linh's daily food is pureed, divided into 6 small meals, and supplemented with self-pressed sesame oil to boost nutrition. She has now started kindergarten.
"Her condition requires lifelong treatment. Our family will do everything to continue sustaining her life," Huong said.
* Character names have been changed.
Phan Duong
Supporting children with rare diseases and difficult circumstances is an activity within the "Sun of Hope" program, implemented by Hope Foundation. Each contribution from the community adds a ray of light to the nation's future generation. Readers can support the program here:
Program name: Your Name - Rare Disease Sun of Hope
Program ID: 22966
