Bone marrow transplant saves 11-year-old with thalassemia

By Thuy Quynh   February 9, 2025 | 06:10 pm PT
After a decade of relying on blood transfusions for her congenital disorder, 11-year-old Dang Thanh Mai Thu is now recovering from a life-saving bone marrow transplant.

Thu was discharged in December after the transplant, but her weakened immune system led to pneumonia, requiring her return to Hue Central Hospital for respiratory support last month.

"Despite this setback, my family is incredibly grateful to the doctors for giving our child a chance at life—no longer bound to the hospital," her father Dang Nhu Hoang, 43, said.

Nguyen Thi Kim Hoa, Deputy Head of the Department of Oncology - Hematology - Bone Marrow Transplant at the hospital, noted that while Thu still requires close post-transplant care, her pneumonia has stabilized.

Anh Hoàng và bé Mai Thư. Ảnh: Gia đình cung cấp

Dang Thanh Mai Thu and her father. Photo courtesy of the family

A childhood tied to hospitals

With her parents divorced, Thu grew up with her father and his family. At just 15 days old, she showed signs of severe illness, including persistent fevers and pale skin. Doctors diagnosed her with thalassemia, a genetic disorder that causes chronic anemia. The standard treatment involved regular blood transfusions and monthly iron chelation therapy.

"Would my child's fate always be tied to the hospital?" Hoang recalled thinking upon hearing the diagnosis. Once or twice a month, he took his daughter for transfusions that lasted four to six hours. Whenever she showed signs of fatigue or jaundice, he rushed her back for more treatment.

While health insurance covered the transfusions, the cost of medication remained high, costing Hoang an average of VND6-8 million (US$237-316) per month—more than VND1 billion over the past decade. Earning just VND7 million a month, he took on side jobs, but the irregular work made financial stability difficult.

Thu's frequent illnesses meant Hoang often missed work, staying up through the night to care for her. When she was two or three years old, he traveled across Vietnam in search of better treatment, clinging to the hope of a cure—but her condition did not improve.

By the age of five, Thu began asking: "Why do I have to go to hospital? Why do the other kids in my class not need blood transfusions?"

Over time, she adjusted to her routine. Despite the bruises from countless needle pricks, she remained resilient, keeping up with her schoolwork and earning the title of excellent student year after year.

Bệnh nhi điều trị tại viện. Ảnh: Gia đình cung cấp

Dang Thanh Mai Thu during a treatment session at Hue Central Hospital. Photo courtesy of the family

A chance at a cure

Doctors told Hoang that a stem cell transplant was his daughter's only chance at a permanent cure. Without it, she would need transfusions for life, risking iron overload complications such as heart failure and cirrhosis. But the procedure came at a steep cost - VND500 million - far beyond the family's means. The additional expenses of staying in a sterile isolation room were also not covered by health insurance.

Fortunately, Thu received partial financial support through "The Sun of Hope," a program by the Hope Foundation and VnExpress.

Tests confirmed her 16-year-old brother, Dang Thanh Quoc Long, was a compatible donor, allowing doctors to proceed with the transplant.

Following the procedure, Thu experienced complications due to a drop in platelet levels but was successfully treated. She also lost her hair - a distressing moment eased by her father's comforting words: "Your hair will grow back, and soon it will be even more beautiful."

Doctors advised that she would need weekly check-ups for six months to a year. If her health remains stable, they can confirm a full recovery.

Bé Thư cùng tập thể y bác sĩ trong ngày xuất viện. Ảnh: Gia đình cung cấp

Dang Thanh Mai Thu with medical staff at Hue Central Hospital on discharge day. Photo courtesy of the family

The burden of thalassemia

Thalassemia places a heavy economic burden on affected families, with treatment costs averaging VND3 billion per patient from birth to 30 years old.

In Vietnam, an estimated 12 million people carry the thalassemia gene, many unaware due to a lack of symptoms. Nationwide, treating all patients requires over VND2,000 billion annually and 500,000 units of blood for transfusions.

Prevention is crucial. If a family member is diagnosed, all siblings should undergo screening. Marriages between gene carriers should be avoided, or if they occur, prenatal diagnosis is essential. When both parents are carriers, their child has a 50% chance of inheriting the disorder and a 25% chance of severe symptoms requiring lifelong treatment.

"Though the past 10 years have been difficult, I know my family - especially Thu - is luckier than many other children still in hospital," Hoang said. "I am incredibly grateful."

With a mission to restore hope for children battling cancer and serious illnesses, the Hope Foundation, in collaboration with Mr. Sun, launched "The Sun of Hope" program. Every contribution from the community adds another ray of light to the future of Vietnam's children.

Click here for more information on the program.

 
 
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