Mum can't hold her own baby due to heartbreaking 'butterfly skin' condition

On 25 March, Ciara Burnside gave birth to her baby boy, Ralph. But the 30-year-old mum can’t hold her own baby now due to him having a ‘butterfly skin’ condition.

When she first laid eyes on her son, she realised ‘something wasn’t quite right’.

Questioning what was wrong with him, the Bedfordshire woman noticed ‘big red patches’ on his hands and feet and he was quickly admitted to intensive care.

After just a few hours, Ralph’s condition progressed to ‘blistering all over his body’.

And the next day, he was diagnosed with epidermolysis bullosa (EB) with a specialist from Great Ormond Street Hospital later telling the parents he would need genetic testing to determine what subtype he had.

EB is known as butterfly skin condition as it effectively makes a person’s skin as fragile as a butterfly’s wings.

Ralph was diagnosed with EB. (PA Real Life)

“They said to us there is a specific type where he may not survive,” Ciara told PA Real Life.

“After that, my partner and I just shut down… we were crying and were very, very upset.”

On 21 May, genetic testing confirmed that both Ciara and her fiancé Lewis are silent carriers of a mutation of the COL17A1 gene, which causes intermediate junctional epidermolysis bullosa (JEB).

For their son, this presents with full body extreme skin fragility and could progress to alopecia, malformed finger and toenails and irregular tooth enamel.

“Doctors have told me that there is a chance (Ralph) will need a wheelchair because his feet will always be very fragile because they were so badly damaged from birth,” Ciara explained.

“He will likely make it to adulthood because his prognosis is not the most severe, but they’ve told me that there is a chance he will lose his hair and fingernails.

“They can’t tell me much else, other than we have to be proactive in stopping complications early. We just have to take each day as it comes.”

It quickly became clear something was wrong. (PA Real Life)

The parents have to give Ralph acid reflux medication to prevent internal blistering in his oesophagus as well as a daily dose of morphine, paracetamol every four to six hours and regular dressing changes.

Even just changing his nappy is a ‘two-person job’ because he can ‘kick around’ but they cannot hold him down or his skin will break.

They’re also ‘too scared’ to bathe Ralph and will sponge bathe him with a flannel or gauze in a bid to ‘carefully’ clean his wounds and body.

Ciara and Lewis also change his clothes twice a day and carry out a full-body check, as blisters can appear at any time.

Ciara wants to raise awareness. (PA Real Life)

“If a blister comes up, it will just keep spreading and getting bigger, unless you pierce it and drain the fluid,” the mum explained.

She has struggled and been in a ‘very bad space’ mentally but the family have received support from Great Ormond Street Hospital and the butterfly skin charity, DEBRA UK.

Ciara is hoping for a cure in the future, or at least an effective treatment to help manage Ralph’s condition.

And she has been raising awareness on social media and has started a petition to increase government funding for rare skin conditions.

“As a parent, I think we’re biologically wired to try and take pain away from our children and to protect them,” the mum said.

“And I guess that’s what I feel like I’m doing by sharing his story.”

You can sign Ciara’s petition here.