Cure for epidermalosis bullosa

Hi everybody. This is the story of Isla's journey and her struggle with a rare condition known as Epidermolosis Bullosa, or EB.


Isla was born via emergency c section, so emotions were running high from the very start. Within a minute, the room was full of doctors and nurses.

My little girl had been born with no skin on her hands and feet. Isla was rushed to intensive care. She underwent test after test.

As a new mum, I was heartbroken. I cried and cried. But then came what I thought was good news. I was told that Isla had an infection – and would be fine with a week of antibiotics.

This soon turned out to not be the case.

Just before 10pm, on the 22nd of July, I was sleeping next to my little girl. Suddenly I was woken up by alarms. Once again, there were doctors and nurses everywhere.

Terrified, I turned to look at Isla.

Her whole body was covered in blisters, from head to toe. I was told to stay calm, but I was screaming for help.

Isla was immediately put onto morphine. Our doctor, Ravi, sat me down in a room.

She looked straight into my eyes and said "I believe your child has EB."

Through tears, I asked Ravi what EB was. Was there a cure? Would it disappear with time?

What I heard next broke my heart.

“I'm so sorry. EB is a rare disease that lasts for life. There’s no cure and no treatment. Isla may only live up to 6 weeks.”

Ravi told me that EB meant Isla was missing the glue from her skin. Any movement, or any friction – even wearing clothes, would make her skin blister and fall out in chunks.

I begged them to help. How were we going to cope?

There are 3 types of EB. The mild type affects the skin. But the worst type makes blisters grow into your child’s heart, causing a horrific death.

We had to wait 8 weeks to find out which type Isla had.

I couldn't hold her.

I couldn't put her in the fairy dresses I had bought.

I woke up every night for 8 weeks thinking that this was just a nightmare. That I’d wake up and everything would be OK. I tried creams after creams, convincing myself that as her mum I could make Isla better. But I soon realised I couldn't. 


After 8 long weeks, there came a knock at the door. It was the EB team, with an envelope in their hands that would determine Isla’s future.

I sat down next to my mum, sobbing. Then they told me the news.

“Isla has EB Simplex. She isn’t going to die."

We fell to the floor in tears. Isla would suffer, but she would live.

For months, I lay next to Isla, watching her every breath, still convinced something bad was going to happen. Isla trusts me to drain her blisters, change her bandages and put cream on her, every day. 
We’ve coped.

Isla’s nearly two now. She still suffers every single day, from blisters all over her body. But she’s so brave.

She tries everything. She doesn’t let anything hold her back. I still suffer emotionally, but she’s such an inspiration. It’s made this nightmare that little bit easier to live through.

I never in a million years expected this to happen to us.

I want to help raise money so the amazing and incredible Irvine McLean and his Lab of Human Sciences in Scotland can try to find my girl – and all the other children like her – something that might just help them handle their day-to-day pain.

Irvine’s been working on this research for 30 years. But due to funding, he’s to keep stopping and starting.

EB affects 1 in 800,000 people. The world needs to realise that people are suffering and dying from this condition every single day.

Please help me raise awareness of this devastating condition. Nobody at our hospital, except for one man, had ever seen this condition before.

Make sure other new mums don’t have to go through what I did.

And help Isla – and every child with this condition – beat EB.

Donations

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  • Naomi Love 
    • £10 
    • 15 mos
  • Carol Jackson 
    • £20 
    • 48 mos
  • Damon Hewson 
    • £20 
    • 48 mos
  • Jodie Byrne 
    • £10 
    • 48 mos
  • Ann Fewtrell 
    • £20 
    • 49 mos
See all

Organizer

Danni Latham 
Organizer
Aldridge, West Midlands, United Kingdom

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