- Oakley Orange was diagnosed with epilepsy and given medication
- But 12 days later he got a headache, cold and developed a rash
- His entire body burst into blisters
before his hair and finger and toe nails fell out – leaving him looking
he had been burnt alive. He has lost all his skin - He is suffering from rare condition called Stevens Johnson Syndrome (SJS) which causes the cells in skin to die
before shedding - Is now on life-support machines and sedated to allow his body to recover
By
Anna Hodgekiss
12:22 EST, 27 December 2013
|
15:41 EST, 27 December 2013
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A seven-year-old boy who suffered a severe allergic reaction to his medication has developed a rare condition which caused his skin to shed.
Oakley Orange was diagnosed with epilepsy and given medication to help manage his condition.
But 12 days after taking the tablets, the youngster started to complain of a headache and cold and developed a rash.
Oakley Orange, 11, was diagnosed with epilepsy and given medication to help manage his condition. But he has since suffered a severe allergic reaction to it – and the allergy has caused his skin to shed
Then his entire body burst into blisters before his hair and finger and toenails fell out – leaving him looking he had been burnt alive.
The bizarre condition is known as Stevens Johnson Syndrome (SJS), which causes the cells in skin to die before shedding – rather like a snake’s.
The severe reaction caused Oakley to lose 100 per cent of his skin and is causing damage to his internal organs.
The youngster has been on life-support machines and sedated for three weeks to allow his body to recover.
But his distraught parents Lorraine, 45 and Steven, 43, have been warned by doctors that his chance of survival is just 65 per cent.
Mrs Orange, from Strood, Kent, has lobbied the drugs company to include a warning on medication.
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.
The severe reaction caused Oakley to lose 100 per cent of his skin and is causing damage to his internal organs. He has also lost his hair and nails and is ‘in agony’, says his mother
‘It has been the worst thing I could ever describe, devastating. He is in agony – and usually he is such a happy little boy.
‘He loves playing on his Xbox and riding his bike and his scooter. Now he can’t even open his eyes.
‘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.
‘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 anything.
‘Each day it is something else, we don’t know what is going to happen, 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.’
She added: ‘We need to raise awareness about the side effects of this drug and make sure it has a warning on the label. In America the drug carries a warning so it should do here, too.
Oakley’s mother Lorraine 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’
‘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. I wouldn’t want anybody
else to go through what we have been through. I just need my little boy
back.’
Oakley was diagnosed with epilepsy last month and prescribed drug carbamazepine. Mrs Orange said the side effects listed on the packaging only said ‘can cause a rash’.Â
He fell ill at school on December 3 and developed a rash on his chest two days later.
Doctors first diagnosed him with a virus and then measles before a dermatologist identified the rare condition.
He has gradually became covered in blisters the size of golf balls before the whole top layer of his skin shed.
Since then he has been wrapped in bandages head to toe to protect his delicate skin and given strong painkillers and sedated to help dull the agonising pain.
The family has received support from celebrities including TV presenter Coleen Nolan and singer Peter Andre
Oakley has the most severe form of
SJSÂ and the swelling has affected his internal organs, so he is on a
ventilator to help him breathe. He also has a related condition called
toxic epidermal necrolysis.
SJS affects just three in one million people and is usually triggered
by an adverse reaction to medication. The mortality rate is around 15
per cent.
Victims develop terrible scarring all over their bodies
and well as severe conjunctivitis which can lead to blindness and mouth
infections which can stop them eating.
OAKLEY’S DRUG: CARBAMAZEPINE
Oakley was prescribed epilepsy drug Carbamazepine, which is sold as Tegretol® and manufactured by Novartis.
The
drugs company today said Toxic Epidermal Necrolysis (TEN) and
Stevens Johnson syndrome (SJS) are listed on the summary of product
characteristics.
A Novartis spokeswoman said: ‘Novartis is
committed to patient safety and strictly complies with local and
international regulations and pharmacovigilance guidelines.
‘For all its products, Novartis evaluates and reviews its global safety database on an ongoing basis.’
She
added: ‘The decision to prescribe Carbamazepine is between an
appropriately qualified healthcare professional and the patient or
appropriate caregiver.’
The NHS website lists SJS and Tens as ‘very rare’ side effects from taking Carbamazepine.
It states that ‘fewer than 1 in 10,000 people’ get the condition.
The
advice reads: ‘Stevens-Johnson syndrome or toxic epidermal necrolysis –
these may be fatal. Seek immediate medical advice if you develop severe
skin reactionsâ€
Family, friends and strangers have raised more than £3,000 to help the family with travel costs to and from the specialist hospital.
The family have also received support from celebrities including TV presenter Coleen Nolan, superbike champion Shane Byrne and singer Peter Andre.
Fundraiser Nina Chaplin, who started the fundraising, even had £45 in cash left on her doorstep by an anonymous donor.
She said: ‘Everyone has been coming together. It has been fantastic.’
Mrs Orange added: ‘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 the family, search Oakley Donation Page on Facebook or visit www.gofundme.com/5vguvk
or comment on this article
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angie28,
Norwich, United Kingdom,
3 days ago
This is a living hell…I have Eczema and at the time of writing this can hardly open my eye’s due to a reaction to perfume…this little boy has my upmost support…
Sterny,
London,
3 days ago
That poor baby! Wishing him so much strength to fight this horrible condition!
Shellywelly,
Cardiff, United Kingdom,
3 days ago
Carbamazepine needs to be looked into. Everyone I know (myself included) has had a reaction to it. Hope the boy’s ok.
voldamort,
essex,
3 days ago
my heart sunk a bit.. hope he gets better as soon as possible xxxx
julie,
Peterborough,
3 days ago
Bless your heart little one, my heart goes out to you all, get well soon xx
LaPetiteModiste,
Wales, United Kingdom,
3 days ago
This broke my heart. Get well soon beautiful boy.
c_love888,
Rochester, United Kingdom,
3 days ago
Poor little mite, I send his family my sincerest prayers for a change around in his condition, so that his little body will start healing soon and fast 3
cynicalbrit,
Norwich,
3 days ago
Poor little boy, praying that he recovers. As a parent I would want someone to blame but unfortunately these terrible reactions can occasionally happen.
IfZÃ,
Coventry, United Kingdom,
3 days ago
Poor little mite wish u all the best from the bottom of my heart
Toomes,
Uk,
3 days ago
Keep fighting Oakley you gorgeous boy!! X
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