A five-year-old boy with ‘butterfly skin’ suffers ‘third-degree burns’ every time he bumps himself.
Jamie Cockeram, from Worcester, was diagnosed with recessive epidermolysis dystrophic bullosa (RDEB) when he was born.
The genetic disorder means the slightest graze causes the outermost layers of his skin to rip off, leaving ‘deep wounds likened to third degree burns’.
The pain of his condition means Jamie often relies on a wheelchair to get about and requires morphine every time he falls over.
Even eating causes blisters to develop in the youngster’s throat and mouth. Last year, Jamie had an operation to widen his oesphagus after it started to narrow due to a build-up of scar tissue.
Despite all he endures, his parents Jenny and Simon, 46, insist their son is a ‘happy, cheeky boy with a great sense of humour’.
Jamie Cockeram (left) has ‘butterfly skin’, which causes him to develop ‘deep wounds likened to third degree burns’ every time he bumps himself. His feet (right) are particularly sensitive, with his big and second toes even fusing together due to the accumulation of scar tissue
Jamie’s parents Jenny and Simon (pictured together) insist he is a ‘cheeky, happy boy’
Speaking of his son’s condition, Mr Cockeram said: ‘He fell over on the grass while playing the other day, which is normal for children. But this caused Jamie a big blister on his knee.
‘We had to give him morphine and take him home to clean it up. He deals with this on a daily basis.
‘Jamie has a permanent supply of morphine. When he is in so much pain his little body shakes uncontrollably.’
Every day before school, Jamie’s parents give him a ‘once over’ to check for any blisters, Worcester News reported. These are then drained with a sterile needle to prevent them spreading.
Jamie’s feet are particularly sensitive and have to be permanently bandaged.
These bandages are changed every other day following his bath, which can take more than an hour.
Repeated damage to his feet means Jamie’s big and second toes have fused together due to the scar tissue that has accumulated.
If his feet and hands are left unprotected, the same could happen to his remaining toes and fingers.
The youngster may one day require an operation to separate his fused digits.
Jamie often loses layers of skin from his face (seen left) due to the genetic disorder recessive epidermolysis dystrophic bullosa. His hands (right) are also very sensitive. If not bandaged, his fingers could fuse together, like his toes, and require surgery to separate
As soon as Jamie was born, Mr and Mrs Cockeram had to adapt to their son’s disability.
‘Simon and I know how to handle him and know how to hug him without causing too much damage,’ Mrs Cockeram, a tax accountant, said.
‘Picking him up was a problem when he was younger as the skin under the armpits were so sensitive it would blister at the slightest pressure.
‘We had to adapt by scooping him up under his bottom instead.
‘As a newborn we had to hold him on a special pillow to reduce the risk of causing blisters as we didn’t know how fragile his skin was.
‘Over time Simon and I learnt how to hold him without the pillow but we were very reluctant to let anyone else touch him.’
The pair only feed Jamie mashed or soft food to prevent blisters developing in his mouth and throat.
Jamie was diagnosed as a newborn (left) and instantly had his feet wrapped up. The damage on his feet (right) means he often requires a wheelchair to get about due to the excruciating pain
Jamie also suffers from corneal abrasions, which causes small scratches to occur on the transparent part of his eyes and leaves him sensitive to light.
His parents either have to keep their curtains closed at all times or Jamie is forced to wear prescription sunglasses indoors.
Mr Cockeram, who works in IT security, said: ‘Jamie has to keep his eyes closed even when the curtains are closed as it’s still too bright for him.
‘He has to play in the dark with his eyes shut tight.’
Despite all that he endures, Jamie manages to stay positive.
‘When he was old enough to realise he was different, he said to me, “Mummy I’ve got butterfly skin so when I fall over I get blisters but it’s okay because I’m a happy boy”, Mrs Cockeram said.
‘That just broke my heart.’
Mr Cockera, who is also father to Daniel, 19, and Lewis, 17, added: ‘EB is horrific, yet Jamie is so resilient and cheeky with a great sense of humour.’
The family are taking part in a 10K charity run on September 15 to raise money for the charity Debra, which supports RDEB patients. Donate here.
Jamie is ‘resilient’ and has a ‘great sense of humour’ despite the pain he is forced to endure
WHAT IS EPIDERMOLYSIS BULLOSA?
Epidermolysis bullosa (EB) is a general term used to describe a group of rare, inherited disorders that cause the skin to become very fragile.
Any trauma or friction causes patients’ skin to blister.
It affects around one in every 50,000 people worldwide. Around 40 per cent of sufferers do not survive the first year and most do not live beyond five years old.
The three main types of the disorder include:
- EB simplex – where blistering occurs in the upper layer of skin. This affects 70 per cent of sufferers
- Dystrophic EB – where blistering occurs in the upper layer beneath the skin’s surface, which affects 25 per cent of patients
- Junctional EB – where blistering occurs in the lower layer of the inner skin, which is usually the most severe form of the condition
Most cases are obvious from birth. EB occurs due to faulty genes, which can be inherited or occur spontaneously.
There is no cure.Treatment focuses on relieving pain and treating complications, such as infections or skin cancer.
Source: NHS Choices and the National Organization for Rare Disorders