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Home   Medway   News   Article

Oakley Orange from Strood has been fighting for his life after being diagnosed with Stevens Johnson Syndrome

28 December 2013
by Jenni Horn

A little boy has been fighting for his life after an allergic reaction to medication.

Seven-year-old Oakley Orange was rushed to hospital after a rash appeared on his chest.

Over the next 24 hours, his parents Steven and Lorraine watched in horror as their son became unrecognisable.

Oakley Orange is in a specialist hospital fighting for his life

Oakley had to be wrapped in bandages from head to toe

His body became covered in blisters the size of golf balls and Oakley had to be wrapped in bandages from head to toe.

He was diagnosed with the rare life-threatening skin condition called Stevens Johnson Syndrome (SJS), where the top layer of skin becomes detached from the lower layers.

Oakley’s condition rapidly deteriorated to the worst form of the condition, known as Tens and he had to be transferred to a specialist burns hospital.

SJS develops into Tens when more than 30% of skin is lost. Oakley has lost 100% of his skin, as well as his fingernails, toenails and hair.

Little Oakley lost 100% of his skin

Little Oakley lost 100% of his skin

The swelling has affected his internal organs so Oakley is on ventilator to help him breathe.

Oakley was given just a 65% chance of survival but mum Lorraine said he has been fighting every day.

She added: “On Friday we thought we had lost him when his temperature plummeted and he was diagnosed with hypothermia. But the doctors have been able to warm him up. After Friday I think he can fight through anything.”

"It is the most horrific thing for a parent to have to see their child suffer in the way Oakley has" - Mrs Orange 

“Each day it is something else, we don’t know what is going to happen from one hour to the next. The condition is affecting all his major organs, one day he could be fine and then it will affect something else. The doctors will treat that, and then it will affect something else.”

Mrs Orange has been at her son’s beside since he was admitted to hospital on December 5, while husband Steven has been trying to visit as much as he can while also looking after Oakley’s brother and sisters Maisie 13, Ellis, 12, and Tilly six, at the family home in Strood.

She said: “It is the most horrific thing for a parent to have to see their child suffer in the way Oakley has. You feel so helpless. It has been the worst thing I could ever describe, it has been devastating.

“Usually Oakley is such a happy little boy. Everybody who meets him falls in love with him. I know I’m biased because I’m his mum but Oakley is the sort of little boy that when you meet him, you don’t forget him.

Oakley Orange, left fighting for his life after a reaction to medication

Oakley before his illness

“He loves playing on his Xbox and riding his bike and his scooter. Now he can’t even open his eyes.”

Stevens Johnson Syndrome is caused by a reaction to medication and in Oakley’s case it was a reaction to a prescription for epilepsy.

Mrs Orange said: “Oakley hadn’t been well for a few months. He was getting very tired and suffering from headaches. He started suffering spasms in his right arm at school and then in his sleep. He was prescribed the medication and he had been on it for 12 days when the rash appeared.

The cheeky chappy before the condition struck

The cheeky chappy before the condition struck

“I want to educate as many people as I can about SJS. This can happen with any medication, not just what Oakley was taking. You need to read the leaflet and make sure your child is not sensitive to anything.

Peter Andre

Peter Andre

"I wouldn’t want anybody else to go through what we have been through. I just need my little boy back.”

Family, friends and strangers have been raising money for Oakley and his family to help with travel costs to and from the hospital. So far more tahn £3,000 has been raised. 

Oakley’s school friends have been making him get well cards and the wall of his hospital room is covered with drawings, cards and messages of support.

The family have received support on Twitter from TV presenter Coleen Nolan, superbike champion Shane Byrne and singer Peter Andre.

Mrs Orange said: “Never in a million years could I have ever expected the things people have done for us and I will never forget it.

“I can‘t find the words to thank everyone enough. I don’t think we could have got through this without them.” 

  • To support Oakley, search Oakley Donation Page on Facebook or visit

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