x Abu Dhabi, UAEWednesday 24 January 2018

The boy who cannot cry

James Lumasag suffers from a rare skin condition that left him unable to produce tears, or stand bright lights.

James Lumasag, seven, has trouble seeing because he suffers from Stevens-Johnson Syndrome.
James Lumasag, seven, has trouble seeing because he suffers from Stevens-Johnson Syndrome.

AL AIN // More than anything else, what Merlyn Lumasag wants her son to do on his seventh birthday is cry. James has been unable to shed any tears since the age of two, when he fell victim to a rare and distressing disease that fused his eyes shut and caused his skin to break out in painful blisters. Toxic epidermal necrolysis (TEN), which affects fewer than one person in a million, is a severe skin disease that can be caused by an allergic reaction to drugs; in James's case, says his mother, it was "due to the antibiotic that the doctor prescribed him for a cough and fever".

A week after he had been given the drugs at St Luke's hospital in Manila, James's skin blistered horrifically all over his body; not for nothing is TEN also sometimes called "scalded baby syndrome". The disease kills at least one in 10 people who contract it - and that figure can rise to 70 per cent, depending on the quality and speed of treatment. Doctors warned James's parents that their son might not survive.

"His whole body, except his head, looked totally burnt," says his mother. "James suffered too much." He spent the month before his second birthday in intensive care at the hospital where, says his mother, he was seen by eight specialists and received 22 bags of plasma. "He's a survivor," says his father, Noel Lumasag. "The doctor said he almost died. He said that we must accept what will happen and be grateful that he did not die."

But survivors of the condition are often left with painful and disfiguring consequences. At first, James's eyes fused shut and remained closed for 17 days, despite an attempt by an ophthalmologist to open them, removing some of the lashes in the process. Eventually, James was able to open his eyes for himself, but the damage had been done; the allergic reaction had scarred his left eyeball and now his lashes grow inward, irritating the surfaces of the eyes and leaving them red and puffy.

His parents have been told he needs an operation to relieve this. He is so sensitive to bright light that he has to wear sunglasses, even indoors. And, despite all the distressing pain and discomfort, he is unable to cry. "He doesn't tell us that it is uncomfortable for him but we can see because he rubs his eyes," says Mrs Lumasag. "If we go out into the sunlight he hugs me and looks at the ground. He can't look up directly."

Because his eyes lack the natural moisture of tears, each morning and evening his parents must pull back his eyelids and rub in ointment. On especially hot or dry days this must be done more often. "The doctor said that if the eyes become dry they will develop cuts on them. In the summer it is the worst: the very bright light is hard for him." James is a shy child who avoids eye contact and would rather hug his mother than talk to strangers. When asked a question, he looks at her and whispers his answer into her ear.

There is one point, however, on which he is very clear: "No, I don't like medicine on my eyes," he says, before turning back to his mother. There is no cure for TEN, but it is important that the symptoms are constantly monitored and managed. Both of James's parents, Filipinos who have lived in the UAE for two decades, work as support staff at a hospital, but this year their medical insurance plan was altered and no longer covers the Dh400 (US$65) cost of the boy's regular appointments with an ophthalmologist.

In desperation, Mr and Mrs Lumasag are experimenting with various medications on the advice of pharmacists, but worry that they might not be doing the right thing for their child. "James is almost seven years old and going to school now," said Mr Lumasag. "Due to our financial situation we cannot afford to pay for his monthly check-ups." His wife added: "I don't know what will happen in the future but I am praying to God that it will be OK."

"We need this treatment, this medication, and we trust God. If there is a possibility to get him cured we have to do that." Yesterday the Dubai branch of Moorfields, the UK's leading eye hospital, offered to carry out an initial examination of James free of charge after being contacted by The National. "This nasty condition is essentially untreatable," said Dr Chris Canning, the chief executive and medical director at the hospital, which opened in Healthcare City two years ago.

"There is no miracle cure anywhere in the world but there are things that can be done to make life easier for James. "It will almost certainly be a lifelong condition but working with our experts in London we can assess him, advise on options and put together a management programme. "We can't cure him, but we can contribute." Dr Canning sounded a note of caution, pointing out that depending on James's condition his long-term eye care could prove expensive and his parents might still need to raise a considerable amount of money.

Nevertheless, James's parents were thrilled to hear of Moorfields' offer. "I am very happy and I thank God," said Mrs Lumasag. "God uses people on this Earth to do good things like this. I want to thank the hospital for agreeing to help my son." Despite his difficulties, James has learnt to speak English and Arabic as well as his native Tagalog. He gets good grades at Jungle Book Nursery in Al Ain but, like most boys his age, he prefers to play on his PlayStation Portable or draw pictures, which he does for hours at a time.

As far as James is concerned, his future is settled: "I want to race a red car in the F1." For now, however, his parents have a more modest goal; they just want to stop his eyes from hurting. Unlike her son, Mrs Lumasag has no shortage of tears. "If I could only give my tears to my child I would be happy," she says. amcmeans@thenational.ae