Oakley Orange, 8, Loses All of His Skin to SJS, but Is Now Helping Others

September 17, 2014, 10:30AM. By Gordon Gibb

Medway, UKWe last met Oakley Orange in 2013. You well remember the story. He is the young UK boy who was diagnosed with Stevens Johnson Syndrome (SJS) and given just a 65 percent chance of survival.

Young boys are supposed to spend their childhoods worrying about baseball, getting their homework done and taking out the garbage. They’re not supposed to worry about their very survival. Young Oakley had enough challenges, given that he also suffers from epilepsy.

The young British boy had enough on his plate as it was, when SJS came calling. Triggered by an allergic reaction to medication he was prescribed for managing his condition, Oakley soon found his skin moving from a Stevens Johnson Syndrome rash to full blisters.

He was hospitalized and moved to intensive care, where he battled for his life for many weeks. He developed hypothermia and a lung infection. He lost his hair, his toenails and fingernails.

He also lost all of his skin to Stevens Johnson Syndrome skin disease. All of it. Stevens Johnson Syndrome is characterized by the massive blistering and sloughing away of large patches of skin. Doctors have described the condition as burning from the inside out. Little wonder that SJS patients are most commonly treated in burn wards of hospitals.

And while SJS patients have been known to lose a majority of their skin, very few patients lose all of their skin and survive. Brave Oakley not only survived, but he’s out of the hospital now and in the throes of establishing a charity to help other sick children.

Oakley, who thankfully appears to have few lingering Stevens Johnson Syndrome symptoms six months after his release from the hospital, is eight now. His younger sister Tilly, who is seven, and older sister Maisie, 13, both cut their long hair in order to make a donation to the Little Princess Trust, which fashions wigs for children who lose their hair to chemotherapy and other conditions.

The charity is to be known as “Oakley’s Outings,” and is raising money in order to fund excursions and other outings for sick children and their families.

Oakley has hitched his fundraising wagon to the Share a Star charity, founded by chronic fatigue victim Jessica Taylor. Now 23, Taylor has been bedridden since she was 15.

Oakley Orange is one of the good news stories that often follow the horrifying circumstances that are Stevens Johnson Syndrome symptoms. Not everyone is so lucky. Many SJS sufferers lucky enough to survive are left with permanent light sensitivity and other vision problems. And many - child and adult alike - don’t survive at all.

Stevens Johnson Syndrome can be triggered through a reaction to even everyday, over-the-counter medications. Plaintiffs in many an SJS lawsuit claim that pharmaceutical manufacturers did not adequately warn consumers of the potential for Stevens Johnson Syndrome skin disease. In Oakley Orange’s case, he did survive. But he and his family endured many months of pain, heartbreak, fear and expense in order to nurse him back to health.

It’s a battle no kid should have to go through or no parent should be made to witness. When it happens, some patients and their families have little choice but to turn to Stevens Johnson Syndrome lawyers, in an attempt to pursue justice and compensation for medical bills, as well as unspeakable pain and suffering.