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Schoolboy Oakley Orange celebrates turning 13 after almost dying from rare Stevens Johnson Syndrome

By Nicola Jordan

A schoolboy who nearly died after an horrific allergic reaction to medication has just celebrated becoming a teenager.

Oakley Orange was rushed to hospital after a severe rash appeared on his chest when he was seven years old.

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

Birthday boy Oakley Orange, 13
Birthday boy Oakley Orange, 13

His body was 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 illness called Stevens Johnson Syndrome where the top layer of skin becomes detached from the lower layers.

His condition deteriorated and he was transferred to a specialist burns unit. He lost 100% of his skin as well as his fingernails, toenails and hair.

Oakley Orange with his mum Lorraine
Oakley Orange with his mum Lorraine

Lorraine said: “It really was touch and go. There were times when we thought we had lost him.

“Getting to 13 is a huge milestone for Oakley and to us as a family.

“He’ s still under four hospitals, including King’s and he has developed problems with his liver and oesophagus. He is looked after by an excellent team.”

Oakley, a pupil at The Meopham School, has just chosen his GCSE subjects, including history and catering.

Oakley Orange recovering in hospital
Oakley Orange recovering in hospital

She said: “He loves school. Sometimes he can only manage half a day or they will call me at 10am if he feels unwell and I pick him up.”

The syndrome, known as SJS, is caused by a reaction to medication and in Oakley’s case it was prompted by a prescription for epilepsy.

Lorraine, of Empire Close, Strood, is still trying to make as many people aware of the little-known condition.

Oakley celebrates his 13th birthday with brother Ellis,17, Maisie,18 and Tilly, 12
Oakley celebrates his 13th birthday with brother Ellis,17, Maisie,18 and Tilly, 12

She said: “This can happen with any medication. You must read the leaflet to make sure your child is not sensitive to anything.”

She is still involved in the charity Oakley’s Outings, wet up in his name to provide trips out for chronically-ill youngsters.

Lorraine said: “I would like to thank everyone who has supported the charity and who sent birthday wishes to Oakley.”

Oakley, his parents, brother Ellis, 17, and sisters Maisie, 18 and Tilly, 12, celebrated his birthday on holiday in Wales.

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