This case generated a big storm, the parents explained why they had no other option

Kavja Solanki was born in October 2018, and when she was 18 months old, her bone marrow was removed and transplanted to Abhidjit, her seven-year-old brother.

Abhidit suffered from thalassemia major, a disease characterized by very low hemoglobin values, for which he received a transfusion every 20-22 days.

“At the age of six, he had received a transfusion 80 times,” said Father Sahdevsin Solanki of Ahmedabad, the largest city in Gujarat, a state in western India.

To better understand what his son was suffering from, the father read everything he could find about it. This is how you found out that bone marrow transplantation brings permanent healing, but no one in the family had the proper bone marrow. In 2017, he came across an article on “rescued brothers and sisters,” babies created with the goal of donating organs, cells, or bone marrow to a brother or sister. He approached Dr. Manisha Banker, one of India’s most famous artificial insemination experts, and convinced him to manufacture a genetically modified fetus that would allow the cure for Abhidjit.

Solanki says she had no other choice. It is true that a suitable bone marrow was found in the United States, but they did not have the money to pay for the procedure, which cost between 5 and 10 million rupees ($ 68,000-136,000). Also, due to the fact that the donor is not a family member, the chances of success were 20-30 percent lower.

The technology applied in the case of small coffee is called genetic preimplantation genetic diagnosis and allows the elimination of the gene that causes the disease of the embryo. It has been used in India for only a few years, and this is the first time it has been used to create a “sister of the savior.” After six months, an embryo that fitted Abhidjit perfectly was made and transplanted into the mother.

“After Kavja was born, we had to wait 16 to 18 months to reach a weight of 10 to 12 kilograms. My sister’s bone marrow was transplanted to Abhidjit in March,” says Dr. Banker.

“Seven months have passed since the transplant and Abhidjit did not need any transfusions. His hemoglobin is now above 11. The doctors say he is cured, ”says the father.

Dr Dipa Trivedi, who underwent a bone marrow transplant, told the BBC that Kavji’s hemoglobin had decreased for some time after the procedure and that she had local pain but was now completely healthy.

“Both Kavya and Abhidjit are completely healthy,” he says.

Adam Nash, who was born in the United States 20 years ago to save his six-year-old sister, who suffered from the rare genetic disease Fanconi syndrome (anemia), is considered the world’s first “baby savior.” At the time, many questioned whether the boy was really wanted or “created as a medical product” to save his sister. Many wondered if this would lead to the creation of the so-called “Designer Babies”.

The Solanki family is in the same situation today.

“We are the ones who really experience it. It is important to consider the intentions of the people who decide to take that step. Imagine yourself in my situation before you begin to judge me,” says the father.

“All parents want their children to be healthy and there is nothing unethical about it. People give birth to children for all possible reasons: to take over the family business, for the family name to survive or for the only one to have company. Why are you questioning my motives? ” I ask.

Kurir.rs/BBC

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