A BABY born with an extremely rare skin disease which means his skin is as fragile as butterfly wings may not live to see Christmas.
Uzziah Bowman, who is little more than a week old, was born with epidermolysis bullosa (EB) – one of just half a million babies in the world with the disease.
Tragically, his skin is so fragile his parents can’t hold him.
His parents Jade, 31 and Lee, 44, are maintaining a bedside vigil while doctors wait to see if he becomes stable enough to perform a potentially life-extending operation.
Medics, who have only given the baby a few months to live, believe his fragile state means he wouldn’t survive the surgery, his parents claim.
Now, Lee and Jade are desperately speaking out to find out what other parents with children who have ED have done.
Lee, a carer from Leicester, said: “Uzziah has a severe case of EB.
“In cases which aren’t as serious, the child usually has a good chance at a more normal life.
“But doctors are saying my baby’s going to die.
“We’re hoping other parents can let us know what they did to help their babies.”
Jade was told at her 20-week scan that Uzziah may be born with a chromosomal problem.
The pair said they “didn’t think much of it”, and were prepared for Uzziah to have a minor disability.
Jade gave birth eight-and-a-half weeks early on July 24, at 9:08am, weighing 3lb 1oz at Leicester Royal Infirmary.
Uzziah was in breech position, forcing Jade to have a C-section over 24 hours after her water broke.
“Uzziah was born with the cord wrapped around his neck, he had so many problems,” Lee said.
The parents spotted patches on Uzziah’s arms, legs and neck.
He was also missing his right ear canal.
Doctors have told the couple their newborn’s skin issues can be put down to severe EB.
EB is a severe genetic skin disorder that affects around 5,000 sufferers in the UK, and only 500,000 worldwide.
Skin is made up of two layers; the outer layer is the epidermis and the inner layer is the dermis.
In healthy skin, proteins hold the two layers together so they do not move separately.
We’ve got a very, very short timeframe with him
Lee
In those born with EB, the layers do not have the protein that holds them together.
It means any movement that creates friction between the two layers creates blisters.
Blisters can develop anywhere on the skin, and the mouth and eyes are particularly susceptible to the sores.
Heat exacerbates the condition.
Some sufferers are born with blisters but others will develop them in the first few weeks of their life.
There is currently no cure.
Treatment for the condition aims to alleviate the painful symptoms and prevent infection.
There are three main types of EB and many more variants of the condition, with experts currently identifying 27 in total.
Uzziah has a very severe form – 90 per cent of babies who have it are unable to survive in their first year, according to the NHS.
“We can’t even tell the full extent of it, at the moment,” Lee added.
“He’s in an incubator at the moment – because he’s jaundiced, too.
“They’ve given him a little hat, so we haven’t been able to see him properly.
“There’s no right ear there – just pieces of skin.”
While the tot needs an operation to correct some of his other unrelated life-threatening issues – like a blockage in his intestine.
But his parents claim doctors say his skin is too weak and that he wouldn’t survive the operation
Lee said: “We’ve got a very, very short timeframe with him.
“I have absolutely no idea what my options are.
“My baby boy is critically ill with this condition.”
While doctors do the best they can for Uzziah, Lee and Jade need to go for genetic blood tests, to see if they’re carriers of EB.
“Uzziah is just being fed with nutrients, at the moment,” he added.
“A specialist EB team have come over from Birmingham Children’s Hospital to help our baby out.”
Epidermolysis bullosa (EB) is an inherited skin disorder.
People who suffer from EB have very fragile skin, and any trauma or friction can cause painful blisters.
There are three main types of EB and many more variants of the condition, with experts currently identifying 27 in total.
In the majority of cases, it becomes obvious that a person has EB soon after birth.
At the moment there is no cure for EB.
Treatment for the condition aims to alleviate the the painful symptoms and prevent infection.
Medical professionals work with families to decide what treatment is best for their child, which could include popping blisters with a sterilised needle and applying protective dressing to affected areas
