So far, more than 150 primary immunodeficiency diseases in humans have been reported. Chronic Granulomatous Disease (CGD) is a genetic and hereditary disease in which phagocytes (a type of immune cell that defend the body by engulfing microbes) do not have the necessary ability to destroy certain microbes. Recurrent infections, infections resistant to treatment, increased incidence of autoimmune diseases, and increased incidence of malignancies are the characteristic symptoms of this disease.
Ali Soltani is among the children who, at the age of 4 months, showed symptoms of immune system deficiency with an abscess under the ear. According to his mother, he was hospitalized for some time in the infectious diseases ward of the Children’s Medical Center, and his immune system deficiency was confirmed by doctors.
Read Ali’s life story in his mother’s words:
From the age of 4 months, even with a simple cold, Ali would develop severe infections. Several times he was hospitalized due to infection. This disease existed in Ali genetically, because his cousin, who is 7 months older than Ali, also suffers from the same disease.
Ali was our first child, born on May 8, 2014. Despite a lot of care we gave to Ali, with every small illness he was severely affected and had to be hospitalized. Finally, doctors diagnosed stem cell transplantation as the cure for this disease, but unfortunately no bone marrow sample was found for Ali’s transplant.
Sometimes you do not think, but it becomes good…
We were still struggling with Ali’s illness when I realized I was pregnant. When I consulted the doctors, I learned that there was a possibility that the next child, who was a girl, could also have the disease. We decided to abort the fetus because the probability of being a carrier was 50 percent. But Ali’s doctor said: there is also a 50 percent chance that the fetus will be healthy and we can use her cord blood to treat Ali. With this hope, we gave up the abortion.
My daughter Aylin, who is now 2 years old, was born on August 16, 2018. She was completely healthy. After Aylin’s cord blood test, it was announced that her sample was completely compatible with her brother’s. After various examinations and tests, Ali was hospitalized on September 25 and on October 13, 2019, the transplant from his sister’s cord blood sample was performed by the Children’s Medical Center. For some time after the transplant, Ali received medication, but now he no longer takes medicine. According to the checkups we have done, everything is normal, and now Ali is even smarter than his peers and studies with great interest.
I want to write my own name
Ali is in first grade this year. Corona has disrupted the world, but for Ali everything has become easier. He studies with his classmates and is not worried about being absent from school. He has started his life very hopefully, and nothing has stopped his smile. He talks with love and passion about studying. He wants to learn all the letters of the alphabet quickly so that he can write his own name.
When we asked Ali about lessons and school, he said: studying is very good. I want to go to school, but now the schools are closed.
He says: I really want to write “Ali.” In Persian and English. I love Persian very much.
When we asked him about the hospital and its hardships, he said: the hospital was hard, but I am strong. I used to tell the children who were in the hospital: be strong. It doesn’t hurt. Eat well and don’t be afraid.
Ali wants to become a policeman when he grows up and catch thieves.
The sweet little boy says: I wish my sister would also become a teacher. I love her very much…