- Here, mother Lara Scott, from Sydney, NSW, tells the story in her own words.
'It’s a girl!’ beamed the delivery nurse, placing my new baby, Lylah, in my arms.
She was beautiful, but the moment I looked at her tiny legs, I gasped.
Lylah’s feet had no skin on them. Translucent, they were already welling up with blisters. Her fingers and hands were also encased in welts.
It’s as if she’s got third-degree burns, I thought. My husband, Matt, 32, and I knew what had happened. Our worse fears had come true.
Lylah had inherited Matt’s rare skin disease, epidermolysis bullosa. It causes the skin to blister at the slightest touch. Matt’s brother and father also have EB, and we’d been warned there was a 50/50 chance that our baby would inherit the disease.
Matt has a less severe form, and his symptoms have improved with time. In fact, when I met him six years ago, I couldn’t even tell he’d been born with EB.
‘I remember having blisters,’ he told me. ‘It could be painful.’
It seemed so unfair that our first child, who’d just come into the world, could already be in pain.
Lylah was transferred to the care of the dedicated EB team at Sydney Children’s Hospital.Nurses showed me how to apply dressings when new blisters erupted. Kids with EB are often called ‘butterfly children’ because their skin is so fragile.
They also put me in touch with DEBRA, a charity that helps families of kids with EB.
No matter how careful we are, she doesn’t keep still and sometimes she’s covered in blisters.
We have to make sure she only wears cotton clothing – and if someone picks her up to cuddle her they have to be careful to hold her a certain way.
Every time I change Lylah’s nappies I examine her carefully to ensure she doesn’t have new blisters.
The good news is that, like Matt, Lylah has a less severe from of EB and in time, she should get much better. Now seven months old, soon she’ll be learning to crawl and with that will come plenty of challenges! She’s generally a happy, smiling little girl and quickly forgets her pain.
Matt and I recently ran in the Sydney City2Surf race to raise funds for DEBRA, so other families of kids with EB get the great support we had.
One day, we hope there’ll be a cure, but until then we’ll take good care of our butterfly princess.
For more, pick up this week's copy of that's life! - on sale now.
