Mojtaba’s Recovery from Thalassemia Major through his Sister’s Stem Cells

Mojtaba’s family comes from Iranshahr, a small city in the Sistan and Baluchestan Province of Iran with a history that dates back thousands of years. Little did his parents know that their child’s destiny would take them on a journey to the edge of modern medicine.

Mojtaba was their first child, born in 2005 after an uneventful pregnancy. For the first three months he seemed healthy, but then he suddenly became very sick. The parents consulted a pediatrician, and routine blood tests were performed. To their great disappointment, the parents learned that Mojtaba had Thalassemia Major.

Thalassemia is a genetic blood disorder where the body does not properly make a protein called hemoglobin^1-3. Red blood cells rely on hemoglobin to carry oxygen. Without enough normal hemoglobin, patients are chronically anemic. Their symptoms include fatigue, weakness, paleness, and slow growth. Severe anemia can cause organ damage and lead to death. There are different types of Thalassemia, called Alpha and Beta, depending on what is wrong with the hemoglobin. Thalassemia is also called Minor and Major, depending on whether a person has one defective gene for making hemoglobin or both are faulty. People who only carry one bad gene often do not have symptoms.

Thalassemia is an inherited disorder.  In some parts of the world, including the middle east, many people carry a gene for Thalassemia. When a child inherits that gene from both parents the child will have Thalassemia Major. Before Mojtaba was diagnosed, neither of his parents were aware they were carrying the Thalassemia genetic trait.

The father of Mojtaba said: “I and my wife were not aware of being involved with Thalassemia minor and when we found out of our child’s sickness, we found ourselves in a chaos, full of distress. But we never lost our hope and did not stop trying all treatment methods.”

He continued, “To find a treatment for Mojtaba, we went to Shariati Hospital (in the capital Tehran) to find appropriate stem cells for transplantation. Unfortunately, no bone marrow match was found among family and relatives or even in public bank… We were so worried as Mojtaba was deeply sick and he received blood platelets and we were always concerned with keeping him away from being infected with viruses.” 

While Mojtaba was undergoing medical supervision and treatment, his mother got pregnant again and his sister Fatemeh Zahra was born in 2007. Following their doctors’ suggestion, the parents arranged to have her cord blood collected and sent to Royan Stem Cell Technology Company to be processed and cryopreserved. The cord blood went through genetic testing and HLA typing. Unfortunately, it did not match Mojtaba close enough for a transplant, so the parents donated the cord blood to Royan for research or transplantation purposes.

Time passed and Mojtaba survived with Thalassemia, but his parents stayed hopeful that a sibling could cure him. His father picks up the story: "In 2016, our second daughter, Tahoura, was born. We saved her cord blood stem cells as well and this time the HLA typing tests came with miracle. Tahoura’s HLA typing was match 10/10 with the ones of her brother, Mojtaba.”

Finally, early in the year 2017, Mojtaba received a transplant of his sister Tahoura’s stem cells and they were accepted with no negative side effects.

Today in 2021 Mojtaba is following an ordinary life after transplantation in full health and he is not considered a sick person any more. Mojtaba is in grade 10 high school studying natural science and is deeply fond of medical courses and subjects. He plans to continue in a medical field at university. 

Royan Stem Cell Technology Company was founded in 2005 as a joint venture of Royan Institute and LIDCO Company (as the investor) to collect, process and store umbilical cord blood stem cells. Royan is a hybrid cord blood bank, providing both private and public storage. Since Royan began operations, more than 144,470 samples total have been stored, including more than 10,000 units in the public division, out of which quite a few have gone for transplantation. The annual demand for stem cell transplantation in Iran is estimated roughly at about 4000, and most transplant grafts are derived from bone marrow, but cord blood stem cells have played a vital role where bone marrow was not available.

References

1. U. S. Centers for Disease Control and Prevention. What is Thalassemia? Last updated 2021-03-30
2. News Medical Life Sciences. Thalassemia Prevalence. Last updated 2021-05-22
3. Bristol Myers Squibb. Evolving Needs of People with Beta Thalassemia. Published 2021-06-03