A year-old boy with a rare and life-threatening condition had his life saved thanks to a transplant from his brother, 7.
“Don’t cry mum. I’ll fix my brother,” Haider Peracha told Maria Uzair, after seeing her cry over the youngest of her three sons, Hamza.
Hamza had haemophagocytic lymphohistiocytosis (HLH) diagnosed after his parents took him to Sheikh Khalifa Medical City with symptoms of high fever – he was only a month old.
HLH is a potentially fatal disease where the body's immune system is compromised when white blood cells, which normally attack viruses or bacteria, instead attack other blood cells. These abnormal blood cells cause organs such as the liver and spleen to enlarge.
“We had never heard of HLH before and were actually praying that it wasn’t leukaemia,” said Hamza’s father, Uzair Peracha, 36.
“But when the doctor told us it wasn’t leukaemia, he didn’t seem happy and we later found out that HLH was a worse prognosis with a lower survival rate.”
All forms of HLH, even those adequately treated, have a high mortality rate. With treatment, only about a quarter of patients are expected to survive longer than five years – but the life expectancy changes depending on the way the disease manifests itself.
The parents, from Pakistan, suspect that a family member had died of HLH, meaning Hamza could have inherited the disease.
“If SKMC had not quickly recognised that it was HLH, we would have lost our son,” Ms Uzair said, who has lived in Abu Dhabi for more than three years.
Hamza underwent eight rounds of chemotherapy at SKMC to treat the disease but the family were told he needed a bone marrow transplant, which could not be performed in the UAE because of a lack of facilities.
The country does have a bone marrow matching service, however, and immediately began testing Hamza’s family – as is standard procedure when searching for transplant donors – to see if any of them could donate. Haider was found to be a perfect match for his younger brother.
"I know that many families struggle with finding a donor so we were lucky when his brother was found to be a match," Mr Peracha said.
"We were worried about him being so young but they told me that taking bone marrow from Haider was like taking a teaspoon from the sea. They were going to take only 50 millilitres worth of bone marrow."
The parents also drew strength from Haider who insisted they not worry or cry. “I’ll save him,” he told them.
With their donor set, the family – whose have relatives in the US – travelled to Washington to have Hamza's transplant performed at Seattle Children's Hospital.
On September 6, Haider was put under general anaesthesia to have marrow drawn from his lower back and hip. The transfusion took four hours but Haider was in good spirits. Nurses had made him a "happy transplant day" poster and hung drawings of his favourite superheroes in his hospital room.
The family spent more than six months in the hospital as Hamza and Haider recovered, returning to Abu Dhabi on New Year’s Eve.
The treatment came at a heavy price, however, costing the family more than a million dirhams. Mr Peracha, who works as a banker, sought the help of charities in the US and signed up to the hospital’s payment plan. The couple is still paying for the treatment in instalments but are grateful their son is alive.
“They call him the million-dollar baby but the operation was a success. God has opened so many doors for us,” Mr Peracha said.
On Tuesday, the family will celebrate Hamza’s first birthday.
His body appears to have accepted the transplant but he still requires up to 10 types of medication each day, including vitamins and an immunosuppressant to ensure his body does not reject his brother's marrow.
The transplant is called a rebirth because the healthy white blood cells in Haider's marrow will destroy and replace Hamza's faulty white blood cells. At this rate, doctors say Hamza will probably not need another transplant in future.
“He’s a survivor and my eldest son is a hero – all my sons are. We’ve gone through the worst period in our lives but it has only made as closer and stronger,” Ms Uzair said.
The family said they were also grateful to the hospital staff and the people who donated blood for the almost daily transfusions Hamza needed.
Mr Pechara and Ms Uzair have since registered to become blood donors to pay it forward.
“If we all become donors, then we can save millions of people,” Mr Pechara said. “That’s the message I tell my friends and family. We don’t know whose blood my son got but would like to give back.”
