- Mason Crossley, from Crook in County Durham, has recessive dystrophic epidermolysis bullosa (EB) which causes his skin to blister and tear
- Healthy skin is formed of three layers and Mason is missing the middle layer, which holds the inner and outer layers together
- Simply getting dressed can cause the 21-month-old excruciating pain
- It took doctors four months to diagnose the condition, which has no cure
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Mason Crossley (pictured) who is known as ‘the butterfly boy’ was diagnosed with recessive dystrophic epidermolysis bullosa (EB)
Bumps and scrapes are a normal part of life for most boisterous toddlers.
But for one little boy even the smallest of knocks can cause his skin to tear and blister causing him excruciating pain.
Mason Crossley, known as a ‘butterfly boy’, was diagnosed with recessive dystrophic epidermolysis bullosa (EB).
His condition is so severe a simple act such as lying on his bed can cause his extremely thin skin to tear.
The toddler, who is 21-months-old, struggles with everyday tasks such as putting on clothes, because the task can cause painful blisters.
There is no cure for EB and his parents Samantha and Miles Crossley, of Crook in County Durham, can do little to make life easier for their son.
Mrs Crossley, a payroll administrator, 29, said: ‘It’s really upsetting to see Mason in pain.
‘He’s a young, active boy and we don’t want to stop him from experiencing everything a boy his age should. But he has to be very careful.
‘He stumbled on to his bed once recently and the bed sheets caused a nasty blister on his face.
‘If he falls or knocks himself no matter how minor, he will always end up with a wound. He screams and cries in pain when we have to change his dressings.
‘It is hard because he doesn’t understand that he has to be put through pain to make him better, otherwise the wound will only get worse.’
One in 17,000 people suffer from some form of EB, and infants with the condition are commonly nicknamed ‘butterfly children’, because their skin is very fragile like a butterfly’s wings.
Healthy skin is formed of three layers, but Mason is missing the middle layer, which holds the inner and outer layers together.
In
August 2012, just days after he was born, the identity band around his
ankle caused a small blister – the first sign something wasn’t right.
Mrs
Crossley said: ‘Everything went so smoothly with the pregnancy and the
birth. But soon after we noticed a blister on the back of his heal.
Warning: Graphic content
Mason, who is 21-months-old, struggles with everyday tasks such as putting on clothes as it can cause painful blisters (pictured)
There is no cure for EB. Healthy skin is formed of three layers, but Mason’s is missing the middle layer, which holds the others together. This means that his skin tears easily and painful blisters common for the toddler. Nasty blisters can be seen on his shoulder and ear (pictured left) and thumb (right)
Mrs Crossley, pictured here with her husband Miles and their son, said: ‘It’s really upsetting to see Mason in pain. He’s a young, active boy and we don’t want to stop him from experiencing everything a boy his age should. But he has to be very careful’
WHAT IS EPIDERMOLYSIS BULLOSA?
Epidermolysis bullosa (EB) is a general term used to describe a group of rare inherited skin disorders that cause the skin to become very fragile.
Any trauma or friction to the skin can cause painful blisters.
Mason has the rarest form of EB where blistering occurs at the junction between the epidermis and the dermis.
In most cases, the symptoms of EB are obvious from birth.
It is caused by faulty genes inherited from one or both parents.
There are many cases when both parents are carriers of the faulty gene without realising it.
EB is rare. Just one in every 17,000 children has it.
There are thought to be 5,000 people living with EB in the UK.
There is no cure for EB so the treatment aims at preventing blisters becoming infected.
‘It wasn’t until more began to appear that we started to worry.
‘The dressings used to treat the blisters became a problem too, pulling more skin off when they were removed.
‘My husband saw the initials ‘EB’ on the nurse’s notes when we took Mason to hospital about it.
‘We did the worst thing you can do at this point. We googled it.
‘We soon realised this was a serious condition and could affect Mason’s quality of life.’
It
wasn’t until March 2013, when Mason was four-months-old, that doctors
confirmed a diagnosis of EB following lengthy testing at Birmingham’s
Children’s Hospital.
Mr Crossley, 30, a Senior Development Manager and Mrs Crossley are both carriers of the EB gene.
If they had another child, there is a one-in-four chance they would also suffer from the condition.
‘It was agonising waiting to find out if Mason had EB,’ Mrs Crossley said.
‘Those first weeks and months are when parents can enjoy their new-born child and to have this hanging over our heads was tough.
‘It can take up to 30 minutes to change Mason’s dressings and it has to be done at least twice a day.
‘There
is the risk of blisters forming on his eyes, if he itches them too
much.
‘This is dangerous because it could potentially affect his sight.’
Mr
Crossley is raising money for DEBRA, a charity which supports families
and Sufferers of EB by taking part in the Great North Run this year.
Anyone wishing to sponsor him can visit his Just Giving page.
Mason’s hands are easily cut and blistered and his mother said: ‘It can take up to 30 minutes to change Mason’s dressings, and it has to be done at least twice a day’
There is the risk of blisters forming on Mason’s eyes, if he itches them too much. This is dangerous because it could potentially affect his sight
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