From Lifelong Transfusions to a New Beginning: An 18-Year-Old with Thalassemia Steps into a New Chapter

Summary: Eighteen-year-old Aguang (pseudonym) was diagnosed with severe beta-thalassemia shortly after birth. For years, regular blood transfusions and iron chelation therapy were essential to keeping him well. Over 15 years of living with the disease, he waited for a fully matched donor and once lost a transplant opportunity when a donor withdrew. After finishing the college entrance examination, Aguang came with his family to GoBroad Chunfu Institute of Hematology & Oncology for evaluation. As haploidentical hematopoietic stem cell transplantation (HSCT) became increasingly established, he ultimately chose a PTCy-based haploidentical transplant. In July 2025, the transplant was successfully completed. He is now recovering well, with stable blood counts, and is gradually leaving long-term transfusions and iron chelation behind. His story reflects the journey from being constrained by thalassemia to reclaiming everyday young adulthood — made possible by advances in medicine, the support of his family, and his own determination.

After the college entrance examination, while his classmates were planning graduation trips, 18-year-old Aguang (pseudonym) and his mother, Ms. Chun (pseudonym), were preparing for a far more important journey: hematopoietic stem cell transplantation, a treatment that could free him from the lifelong burden of severe thalassemia. In the summer of 2025, Aguang and his mother came to GoBroad Chunfu Institute of Hematology & Oncology, where he was treated by Dr. Jianyun Liao and underwent a PTCy-based haploidentical transplant. Five months after transplantation, his follow-up results remain stable. He plans to begin university next September, ready to start this new chapter with a healthier body.

01 Diagnosed with Severe Thalassemia: The Weight of “Lifelong” Treatment

In 2008, before Aguang was seven months old, his parents took him to a local hospital because he looked pale and had little appetite. The diagnosis — severe beta-thalassemia — came as a devastating blow to the family.

“Severe beta-thalassemia means lifelong blood transfusions and iron chelation therapy...” Ms. Chun understood every word on the report, but together they felt unbearably heavy. The idea of “lifelong” suddenly carried a weight she could hardly describe.

On the advice of a local doctor, Ms. Chun took her baby to see Prof. Chunfu Li, who was then practicing at Nanfang Hospital. Prof. Li told her, “Thalassemia can achieve deep remission. If the hematopoietic stem cell transplant is successful, your child can live like other children.” As parents, giving up was never really an option. But that reassuring answer gave Ms. Chun the courage to keep going.

02 Searching for a Fully Matched Donor: Hope, Lost and Found

At the time, transplantation from a fully HLA-matched donor was the more established option. After no one in the family proved to be a match, Ms. Chun turned to the China Marrow Donor Program (CMDP), hoping to find what felt like a genetic needle in a haystack. Two years — more than 700 days — passed between hope and disappointment. Then, when Aguang was three, the call finally came: “We found one. There is a fully matched donor.”

The day the match was confirmed, Ms. Chun held both of her children and cried, believing the hardest part was finally over. But the transplant plan was abruptly halted. Shortly before stem cell collection, the donor decided not to proceed and cut off contact. To see hope burn so brightly and then disappear was, for the family, even harder than never having found it at all. Ms. Chun asked Prof. Li, “If a fully matched transplant is no longer possible, is there another way to treat this disease?” Prof. Li explained that a haploidentical transplant could also be considered, but the approach was not yet mature at the time. If the family was willing, they could wait, because medicine would continue to advance. Ms. Chun kept searching, but another fully matched donor never came.

Waiting became something the whole family learned to live with — waiting for transplant technology to mature, and waiting for another chance.

03 Longing to Break Free from Thalassemia: 15 Years Tied to Transfusions

At 173 cm tall, lean but not frail, Aguang looked much like any other teenager thanks to the careful support of his mother and older sister. But he always knew his life was different.

As Aguang grew older and gained weight, his transfusion needs steadily increased — from one unit of red blood cells every 40 days to 4.5 units every 20 days, just to keep his hemoglobin at around 60 g/L. What does 60 g/L feel like? Aguang compared it to a phone that is always stuck at 15% battery, with just enough power for the most basic functions. “Even sitting up in bed, I had to wait about 30 seconds or my vision would go dark. I couldn’t run or jump. In PE class, I was always the one watching from the sidelines.” Long-term transfusions brought another concern: his ferritin levels remained around 2,000–3,000 ng/mL. Excess iron could build up in organs such as the liver and heart, creating another threat to his health. To manage it, he needed long-term oral iron chelation therapy as well as deferoxamine injections.

To make sure Aguang could continue receiving transfusions and iron chelation, the family cut back on every nonessential expense. Ms. Chun saved wherever she could. She ate the simplest meals at her workplace cafeteria, avoided extra spending, and volunteered for holiday shifts whenever others preferred to take time off, simply to earn a little more overtime pay.

But there was one thing hard work alone could not solve: blood shortages. For many people, a notice about low blood supplies might be just another headline. For Aguang’s family, it could directly affect whether he could maintain his everyday health. That uncertainty was frightening.

04 Expert Support: Turning Fear of the Unknown into Risks That Could Be Managed

The possibility of transplantation came up again after Aguang finished the college entrance examination and received his university admission letter. Still unsure whether they should keep waiting for a fully matched donor, Ms. Chun returned to GoBroad Chunfu Institute of Hematology & Oncology to speak with Prof. Li and Dr. Liao. Dr. Jianyun Liao gave the family a clear answer: “There is no need to keep waiting for a full match. Haploidentical transplantation is now a well-established approach, with strong success rates.” Hope returned, but so did a new set of very real concerns. The family held countless discussions, and this time the final decision rested with Aguang, who had just turned 18. “I was afraid. I worried that if the transplant failed, I might lose even the life I had then. Would donating stem cells harm my sister? Could the transplant affect my fertility? Would I still be able to have a family one day?” Dr. Liao’s team addressed each concern carefully and patiently. They shared detailed transplant data and examples of successful adult cases to help the family understand that haploidentical transplantation had become a mature and safe option. Aguang’s sister also underwent a thorough donor evaluation, helping ease the family’s concerns. Before transplantation, the team coordinated with a reproductive medicine center to preserve Aguang’s fertility, keeping more possibilities open for his future.

Every conversation with Dr. Liao gave Aguang greater confidence, turning unknown fears into risks he could understand and prepare for. In the end, he made the decision himself to move forward with transplantation. In July 2025, with his mother by his side, Aguang was admitted to the transplant isolation unit.

05 Leaving the Transplant Unit: Taking the Future Back into His Own Hands

When the isolation-room door closed, it separated Aguang from the outside world — but it also marked the beginning of a new chapter. Dr. Liao, the physicians, and the nursing team became the closest partners Aguang and his mother had through the transplant. Ms. Chun still remembers those days vividly.

“Before we went in, I was so scared that I couldn’t sleep at night. But once we were there, I realized Dr. Liao and the nurses were even more attentive than I had imagined.” When Aguang developed a fever during chemotherapy, the nurses stayed by his bedside through the night to monitor him and guide his care. When he lost his appetite and refused to eat, Dr. Liao patiently encouraged him: “Think of food as part of your medicine. You need the strength to get through this.”

These small acts of care became a source of warmth during a difficult time. Aguang’s cooperation, his family’s trust, and the medical team’s expertise and compassion helped the transplant move forward smoothly. After leaving protective isolation, signs of recovery showed up in everyday details: his hemoglobin stabilized at around 120 g/L, he gained about 10 kg, color returned to his face, and the transfusion bags and chelation pump that had been part of his life for years were finally gone.

Before transplantation, Aguang had already received his university admission letter. He chose to take a year off so he could focus on follow-up care and recovery. His hope is simple: to begin university in good health — to run, jump, join clubs he enjoys, and take part in internships with his classmates. For most people, these are ordinary parts of student life. For Aguang, they represent something far more meaningful: the freedom to move forward.