Emma Minney and Jamie Morris’s daughter Blakely Morris was diagnosed with epidermolysis bullosa, a rare genetic disease that causes fragile skin, at an early age. After spending a lot of time at the Royal Children’s Hospital, Blakely is now a happy and healthy two-year-old.

By Aleksandra Bliszczyk

A MERNDA family is sharing its experience of the Royal Children’s Hospital to encourage donations to mark the Good Friday Appeal’s 90th anniversary.

Emma Minney and Jamie Morris said the staff at the Royal Children’s Hospital became their second family after their daughter Blakely was diagnosed with epidermolysis bullosa, EB, a rare genetic disease that causes fragile skin.

Blakely was born early at 37 weeks, and they knew something was wrong when at four days old, she developed a blister that didn’t heal under a bandage.

When they took Blakely back to a local hospital to be examined, the doctor removed the adhesive bandage and much of the skin on Blakely’s lower back came off with it.

With a fever and a suspected infection, she was kept in a humified crib in hospital, where the skin all over her body and face broke out into blisters and her doctors suspected EB, which can be exacerbated by changing temperatures.

“It was at that point where we said we want her transferred, we want her at the Children’s because this is getting scary,” Ms Minney said.

“The whole team was already there so I walked into a room of eight doctors. They sort of did their little handover with the paramedics and the team, and then … Lauren [a nurse and the EB coordinator] sat down with us and went through what it would mean if she did have EB and what it was to us.

“I guess for the first time in the eight days that we had had Blakely, I felt relieved almost, like she cared. I didn’t have very much fight left in me when we got to the Children’s, it was a very exhausting time, but we felt like we were finally safe.”

Jamie Morris and Emma Minney with daughter Blakely.

Living more than an hour’s drive from the Royal Children’s Hospital, Ms Minney and Mr Morris were worried they would have to ‘tag-team’ staying in Melbourne, expecting they would be separated from Blakely for periods of time. But they were put up in a room immediately, and given 24-hours-a-day access to their daughter.

“We didn’t ask for the room, they offered it straight away. We were able to go up to the ward and see Blakely at any time of night while we were staying there,” Ms Minney said.

“She had a one-on-one nurse because she was in the ICU anyway. I could not fault the nurses. They definitely treated her like she was their own, they would sing to her, they would cuddle her all night long, so we felt comfortable going and getting that little bit of sleep because we knew that she was still being loved.”

Blakely underwent genetic testing, and the samples were sent to the United States and returned to confirm her EB diagnosis.

Today she is a thriving, happy two-year-old, living a relatively uninterrupted life with EB.

Ms Minney said it took a long time for the couple to wrap their heads around what the diagnosis meant for Blakely and for them as a family, but last year they shared her story on social media to coincide with Good Friday to raise money for the appeal.

This year they are encouraging their community to support the healthcare workers who not only helped them but continue to work on the front line of the COVID-19 pandemic.

Since 1931, the Good Friday Appeal raises more money each year, bringing in $18.2 million in 2020 and contributing more than $381 million in total.  

The money has gone towards breakthrough research, equipment and technology, bettering patient and family care, and education and training for its 4000 staff members.

The Channel 7 broadcast, which will be live from 12pm on Good Friday.

Donations can be made via the Good Friday Appeal website at www.goodfridayappeal.com.au/fundraise.