Singapore doctors cure baby of rare immune disorder

Boy with first known case of Omenn syndrome here saved by stem-cell transplant

From the age of two months, baby Donovan Tay (right) developed unexplained fever, unusually severe eczema that covered his entire body and blood abnormalities. His skin was also turning black from what was later diagnosed as Omenn syndrome, an extrem
From the age of two months, baby Donovan Tay developed unexplained fever, unusually severe eczema that covered his entire body and blood abnormalities. His skin was also turning black from what was later diagnosed as Omenn syndrome, an extremely rare immune disorder. But he turned the corner after a successful stem-cell transplant in February last year. Now a bright and lively two-year-old, he is pictured here with his parents, Mr Keith Tay and Ms Jace Lee (above). PHOTOS: KEITH TAY, MATTHIAS HO FOR THE STRAITS TIMES

Doctors here have diagnosed and cured a baby of Omenn syndrome, the first known case of the extremely rare disease in Singapore.

Donovan Tay began to get very ill from the age of two months, plagued by unexplained fever, unusually severe eczema that covered his entire body, making him itch incessantly, and blood abnormalities.

It was Dr Soh Jian Yi, a consultant at the National University Hospital's paediatric allergy, immunology and rheumatology division, who was finally able to pinpoint what he was suffering from.

"It is so rare that I had never seen it before, but in the end, it could only have been that," he said.

Omenn syndrome is caused by mutations in genes that are critical to the immune system, which protects the body from infections. It is thought to occur in fewer than one in a million people, and is fatal if not treated.

But Donovan could be cured if a transplant of blood-forming or cord blood stem cells worked.

Time was running out, though, as he became critically ill.

On New Year's Eve in 2014, the tiny baby's heart stopped beating for 18 minutes before doctors were able to resuscitate him.

But he turned the corner after a successful stem-cell transplant two months later - in February last year - from his mother, housewife Jace Lee, 34.

Now a bright, lively boy, he is unrecognisable from the baby whose organs had begun to shut down and whose skin was turning black from the immune disorder.

As their son turns two on July 10, his parents are looking forward to taking him to pre-school and other activities, such as baby gym and swimming, which he has missed out on so far.

Said Ms Lee: "He's very sociable, but he's been kept away from his peers, he's been a bubble boy for so long. Now we have the chance to take him out, especially to places where he can be with other kids."

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A version of this article appeared in the print edition of The Straits Times on June 17, 2016, with the headline Singapore doctors cure baby of rare immune disorder. Subscribe