06/08/2026
Be aware LONG POST INCOMING!
Our Story 🤍🦋
If you’re new here, welcome. My name is Breaan, and I’m the proud mum of the most incredible little girl, Islah-Maria Kepa.
Before I tell you about EB, I want you to know who she is.
She is cheeky, funny, loving, determined, and full of life. She has the most beautiful smile that can brighten even my darkest days. She isn’t defined by her diagnosis. She is, and always will be, my daughter first.
But this is the story of how our lives changed forever.
From the day Islah was born, I knew something wasn’t right.
Small blisters began appearing on her fingers and feet. They were painful, and they kept coming back. At first, I was told she must be sucking her fingers. But I remember thinking, “She doesn’t suck her toes…” A mother’s instinct is a powerful thing, and deep down I knew there had to be another answer.
Appointment after appointment, I was offered cream after cream. I think there were close to ten different creams suggested. None of them explained why this was happening.
Eventually, I found the courage to say, “No. I need someone to look deeper. I need someone who knows more.”
That decision changed everything.
When Islah was around six or seven months old, Mum and I travelled to Hamilton to see a dermatologist. That was the day we first heard the words Epidermolysis Bullosa.
A condition so rare that I had never even heard its name before.
The dermatologist explained that EB causes the skin to blister and tear from the slightest friction or pressure. Something as simple as crawling, holding a toy, wearing shoes, or even rubbing against clothing can cause painful wounds.
I remember sitting there trying to take it all in.
I cried.
Not because I thought my daughter was any less perfect… but because I knew life had suddenly become much harder than I ever imagined it would be.
As a mother, you always wish you could take your child’s pain away.
Learning that there was no cure broke my heart.
But after the tears came determination.
If I couldn’t take EB away from my daughter, then I was going to learn everything I possibly could about it. I promised myself that no matter how overwhelming it became, I would fight beside her every single day.
That promise still stands today.
A few months later we travelled to Starship Hospital, where we met an incredible dermatologist who specialises in EB. For the first time, I felt like we weren’t facing this alone.
Blood tests were taken, and then came one of the hardest parts…
Waiting.
Waiting for answers.
Waiting to know what our future might look like.
Every phone call made my heart race.
Every day felt endless.
During that waiting period, my family and I attended the DEBRA New Zealand conference in Wellington.
Looking back, I truly believe we were meant to be there.
For the first time, we met other families who understood our reality without needing an explanation.
Children whose skin looked like Islah’s.
Parents who knew exactly what sleepless nights, wound care, tears, and fear felt like.
For the first time since this journey began…
We didn’t feel alone.
Watching Islah play with other children living with EB filled my heart in a way I can’t describe. She belonged. She wasn’t different there.
None of us wanted to leave.
Then came the phone call.
The words I’ll never forget.
“Islah-Maria has Recessive Dystrophic Epidermolysis Bullosa.”
At that stage, I’d only just learned what Epidermolysis Bullosa meant.
Now there were even more words I didn’t understand.
So I did what every worried mum does.
I searched.
And I wish I hadn’t.
Everything I read terrified me.
The internet painted a future filled with fear, pain and uncertainty.
I remember sitting there wondering…
“What does this mean for my baby?”
Not long afterwards, another EB mum reached out to me. Her son has the same subtype as Islah.
She was surprised by how different their symptoms were.
That conversation gave me something I desperately needed.
Hope.
Because although they share the same diagnosis, every person living with EB experiences it differently.
That reminded me that statistics don’t define my daughter.
EB doesn’t define her future.
Islah will write her own story.
Today, we continue learning.
We continue adapting.
We continue asking questions.
We continue advocating.
Some days are heartbreaking.
Some days are exhausting.
Some days I cry after she falls asleep because being strong all day catches up with me.
But every morning, I wake up and choose hope again.
People often ask me why I share so much online.
The answer is simple.
Because before Islah, I had never heard of EB.
If sharing our journey means another family gets answers sooner…
If one healthcare professional remembers what they’ve learned here…
If one child with EB grows up feeling less alone…
Then every vulnerable post is worth it.
This page isn’t about seeking sympathy.
It’s about creating understanding.
It’s about showing the reality of life with EB—the beautiful moments alongside the painful ones.
It’s about giving my daughter a voice until she’s old enough to use her own.
Thank you for being here.
Thank you for learning.
Thank you for standing beside us.
We don’t know exactly what tomorrow holds.
But we do know one thing…
No matter what challenges EB brings, Islah will never face them alone.
Welcome to our journey.
Love,
Breaan & Islah-Maria 🤍🦋
