x Abu Dhabi, UAEWednesday 26 July 2017

Brother and sister share a life-saving bond

Mahra Al Darmaki gained a new lease on life after a stem cell transplant from her infant brother, Mohammed.

Al Yamahi with her daughter Mahra Naj Al Darmaki, 4, and son Mohammed Naj Al Darmaki, 2, at her residence in Kalba. Satish Kumar / The National
Al Yamahi with her daughter Mahra Naj Al Darmaki, 4, and son Mohammed Naj Al Darmaki, 2, at her residence in Kalba. Satish Kumar / The National

Mahra Naji Al Darmaki and her brother Mohammed have a special bond, and not just because they are siblings.

After Mahra was born in 2008 in Kalba Hospital, she and her mother, Amani Al Yamahi, were discharged without any problems.

Four months later, things changed. The family travelled to India on holiday and Amani's grandparents were concerned about Mahra when they returned.

"The colour of her complexion was changing but I didn't notice because I was around her all the time," Ms Al Yamahi said. "Her grandfather said that's not Mahra, you must have traded her for someone else. So I started looking at pictures I had taken on my phone, and indeed I saw Mahra's colour changing."

Mahra was taken back to the hospital, where she received a diagnosis of thalassaemia, an inherited blood disorder marked by low levels of healthy red blood cells and haemoglobin.

Nearly half of the Emirati population carries the gene for the disease, which is recessive. When two carriers marry, the chance of having an ill child is one in four with each birth.

Married before the premarital screening law came into place, Mahra's parents were unaware they were carriers.

The hospital referred Mahra to the thalassaemia centre at Latifa Hospital, where she received blood transfusions monthly. The process was painful for Mahra and her parents.

"There was one day I'll never forget when they pricked Mahra seven times trying to search for a vein," Ms Al Yamahi said.

"They pricked her hands, her legs, they left nothing. Here I broke down and I said enough, don't give her blood or anything. They told me this is the first time and you're like this, what about later? They said I had to bear it."

A doctor at Latifa Hospital told Ms Al Yamahi about stem-cell therapy using cord blood.

She decided to have another child using preimplantation genetic diagnosis (PGD), which is used with in-vitro fertilisation, to determine if there are chromosomal abnormalities in an embryo before it is implanted into the womb. But before the couple had an opportunity to start the process, Ms Al Yamahi became pregnant naturally.

To their relief, an amniocentesis procedure determined the baby was fine genetically. When Mohammed was born, the cord blood was collected and the stem cells stored at the Dubai Cord Blood and Research Centre.

When Mahra was nearly 3, the family travelled to the UK for a transplant, but the decision was not easy for Ms Al Yamahi.

Mahra had three sessions of chemotherapy, which is used to prepare the body to receive the new cells.

"She lost her hair, she became very thin and her complexion changed," Ms Al Yamahi said. "Her immunity was low and she had to be in an isolated room for a couple of weeks. I wouldn't even let the smallest speck of dust touch her."

After chemotherapy, she was prepared for a transplant. But doctors found Mohammed's collected stem cells were too few, and they had to take more from his bone marrow.

"The whole family grew weary," Ms Al Yamahi said. "Seeing your children go through this, it's not easy. But we knew that it was worth it in the long run so we did our best and left our fate to God."

The transplant was a success and Mahra, now 4, no longer requires blood transfusions and only gives small samples to the thalassaemia centre for follow-ups.

Since the procedure, Mahra's spirit has improved.

Covered in pink from head-to-toe, she parades around the guest room, asking her mother to go to the water park and to buy her toys. Mohammed carries around his pet bird, eagerly showing it to his sister. The two have a bond that cannot be forgotten.

"They're young, but they still understand," Ms Al Yamahi said. "Who is your life?" she asked Mahra. "Hamoodi, Hamoodi is my life."

mismail@thenational.ae