Now, Laura Cabales, 42, has released a series of shocking pictures of her son, Xander, who nearly three years after developing Stevens-Johnson Syndrome remains seriously ill.
Unable to produce any saliva, Xander, who despite his ailments remains a happy-go-lucky boy, finds it difficult to eat.
He also has to wear sunglasses , when outside or under bright lights, or what little remains of his vision will be permanently damaged.
He has also suffered long-lasting damage to his lungs and is forced to rely on a nebuliser three times a day to aid his breathing.
Stevens-Johnson Syndrome is a rare illness, where a person suffers an extreme and unpredictable adverse reaction to medication.
Classed as a medical emergency, according to the NHS, it causes a sufferer’s skin and mucus membrane to peel off.
In schoolboy Xander’s case, he started burning from the inside out just days after taking Motrin a common US drug for children, which is similar to the anti-inflammatory painkiller ibuprofen, in June 2014.
Over a period of just five days, he went from perfectly healthy to desperately ill. His small left lung collapsed, his skin melted and he went into a state of septic shock, as blood poisoning took over his body.
Laura, who used to work in a bank to care for him, recalled how, at his sickest, doctors had to physically stitch a breathing tube to the inside of Xander’s mouth, because his skin was melting away so rapidly.
Shockingly, it was the only way the tube – which enabled him to breathe while his lung was incapacitated – would stay secure.
Her son’s ordeal started with a simple fever, common in children.
Laura and her husband, military worker, Ronnie, 42, were relatively unconcerned and fed him Motrin to soothe him.
The fever vanished, but a few hours later it returned, worse than before.
Concerned, his mum and dad rushed him to Tripler Medical Center Hospital in Honolulu, near their home.
As his condition worsened, Xander’s behaviour became aggressive and he was admitted to casualty.
Before his parents’ horrified eyes, he deteriorated.
“He’s effectively blind, whereas once he had 20/20 sight.
“He is photophobic, so can’t stand bright lights, and needs sunglasses all the time.
“He’s been bullied for this, but we are full of admiration for our brave boy and think he looks cool.”
A spokesman from Johnson and Johnson, who make Motrin, said: “As the makers of MOTRIN® (ibuprofen) products, we are committed to providing consumers with safe and effective over-the-counter medicines.
Over decades and millions of uses, ibuprofen has proven safe and effective when used as directed.
"We are sympathetic to the pain and hardships suffered by anyone affected by Stevens-Johnson Syndrome.”
The family were supported by charities the Kapiolani Health Foundation and the Stevens Johnson Syndrome Foundation.
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