Baby Uzziah Bowman born with rare skin condition epidermolysis bullosa may not live to see Christmas

Parents, desperate to give their tiny baby a chance at life have spoken out about his rare condition. Jade, 31 and Lee, 44, would like to hear from parents of children with the same condition to see if there is anything that can be done to save their little boy.

Uzziah Bowman, just five days old, was born with an extremely rare skin disease which means his skin is as fragile as butterfly wings. One of just 500,000 babies in the world with epidermolysis bullosa (EB), it is believed he may not live to see Christmas.

His skin is so fragile his parents can't hold him but they maintain a bedside vigil while doctors wait to see if he becomes stable enough for an operation on a blockage in his intestine. Currently doctors say his fragile state means he wouldn’t survive the operation, say Jade and Lee.

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 speaking out in the hopes 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 but the pair say they “didn’t think much of it” - and were prepared for Uzziah to have a minor disability. 

On July 24, at 9.08am, Jade gave birth eight-and-a-half weeks early at Leicester Royal Infirmary. Uzziah was in breech position, leading to Jade having a C-section, 24 hours after her water broke. He weighed just 3lb 1oz.

Jade and Lee spotted patches on Uzziah’s arms, legs and neck. He’s also missing a right ear canal - with a patch of skin growing where it “should be”. Doctors told the couple their newborn’s skin issues were caused by severe EB, which 90% of babies are unable to survive beyond 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 - doctors say his fragile state means he wouldn’t survive, according to his dad.

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,” Lee added. “Me and my wife need genetic testing done. A specialist EB team have come over from Birmingham Children's Hospital to help our baby out.”