please help baby victoria and family

On Saturday the 20th of January 2024 I gave birth to my first child, Victoria Kay, my little baby girl. throughout the pregnancy there was no concerns. However, after her natural birth at Gosford Hospital there were some complications, Victoria had loss of skin to one hand and one foot. the more Gosford hospital handled her, her skin was tearing and blistering. after further investigating it came back, they believed Victoria had Epidermolysis Bullosa.

we were relocated that same day to the NICU Care at Royal women’s hospital at Randwick by this stage all Victoria’s limbs were bandaged. I was sad and overwhelmed. I had just given birth and I was in an unknown area with people I didn’t know and a little girl I couldn’t hold. the nursing staff were so kind and allowed me to stay while Victoria was a patient there before being moved to the Sydney Children’s Hospital one week later for further monitoring and investigation and again allowed me to stay at the Ronald MacDonald house.

I met so many people, doctors, specialists, midwives, dermatologists, paediatricians, some I can’t remember but when you have that first person or team come to you and tell you this is what we think it is, this is what we can do. you’re not alone. you'll never forget them. ash, Bec and Artiene and more. the best team I could have asked for in this life to look after baby Victoria.

to get a diagnosis of Epidermolysis Bullosa they had to take Victoria’s blood for genetic testing, there are 4 categories of Epidermolysis Bullosa.

EB is hereditary, unfortunately for justin and I we had never heard of EB or know anyone in the family to have this.

we were discharged after 2 weeks, and after weekly visits to Randwick children’s hospital and the paediatric team at Wyong hospital who specialise in wounds and burns. to monthly clinic reviews. at 3 months old Victorias results sadly returned as junctional Epidermolysis Bullosa a very rare condition that causes the skin to be extremely fragile causing painful itchy blisters. Junctional EB is the most severe subtype.

It is lifelong and life limiting disease not only affects the skin, but also the lining of the mouth and the digestive tract and respiratory tract. making it hard to eat and swallow and causing problems with her airway. Victoria is currently 13 months old with all limbs bandage for how long this will be we don’t know, Victoria has some development delays, and not have that fine hand motor skill due to bandages. but she is trying.

Other complications Victoria may experience with Junctional Epidermolysis Bullosa is abnormalities with loss of her fingernails and toenails that don’t grow back, joint deformities, hair loss as victoria gets wounds on her scalp, and dental problems. Victoria has now lost all her nails.

The cause of JEB is the genetic code. COL17A

There is no current cure for Epidermolysis Bullosa. The aim is to reduce new blisters developing, promote skin healing and prevent infections. by pain managing and wound care managing to give Victoria the best quality of life she can get.

The treatment is limited, and challenging, wound care and pain management is essential. Every time a blister appears, it needs to be popped with a surgical needle and a dressing applied immediately to prevent infection. Including blood blisters.

The following months have been an absolute whirlwind of stress, hospital appointments in Sydney, tests, observations, preparing lots of dressing packs, cutting the seams out of nappies all while learning life as a new mum. but due to her complex condition I am unable to place Victoria in childcare or return to work fully.

Victoria is one of the most beautiful souls and has been super brave at every turn. I know there will be so many questions, but unfortunately now I don’t have all the answers. I am learning information as we journey down this path.

Please keep Victoria in your thoughts and prayers.

We have a massive road ahead of us and we need as much support as possible. Our days have become full of tears, loneliness, fear of the unknown, sleepless nights and our heads are swimming with information that is just not sinking in right now.

I am very grateful for the beautiful messages everyone is sending, and I simply cannot keep up.

i like to thank DEBRA Australia for supporting me where they can.

however, there is always ongoing extra costs for special clothing (seamless) and other medical supplies.

Not usually one to ask for support or assistance, and I have received so many generous offers. I have set up a GoFundMe account which any donations would be so incredibly appreciated to assist with these extra costs which will change as she grows and gets mobile. This will ultimately free up the need to spend with my beautiful baby girl without worrying about the bills piling up.

We know in times like these it can be hard to donate, so if you could share it around it would be more than enough. Please keep us in your thoughts.

It would also be beneficial to check out EBRP and Debra Australia and donate where you can help find a cure one day for all the EB babies in the world.

thank you, Victoria’s family