IN MEMORY OF ELIZA

Hi,

My name is Sean Wright and I have been given a school project to do, something of my choice. I have chosen to raise funds to go towards further research to find an effective treatment and/or cure for the condition known as Epidermolysis Bullosa (EB).

I have been lucky to grow up knowing Eliza Baird, who sadly suffered from this dreadful disease.

Epidermolysis Bullosa (EB) is a rare genetic disease that causes the skin to blister and peel. These blisters form at the slightest touch and the results are often likened to third-degree burns.

Eliza Baird was born with this rare genetic condition, making her skin as fragile as butterfly wings. When Eliza was born back in 2000 her whole foot was raw, she didn’t have any skin on it whatsoever, or her knee, right down her shin. She was missing some skin off the backs of her hands, and her tongue was also affected. Eliza was rushed to the Royal Children’s Hospital and 2 weeks later was diagnosed with recessive dystrophic epidermolysis bullosa (EB).
 
For the first six months of her life Eliza just screamed. Eliza lived her whole life in constant pain and required morning and evening dressing changes including salt and bleach baths which took approximately three hours, three times a week. Her fingers and toes would web and form strictures, the skin in her throat would become so tight from scar tissue that she wouldn’t be able to eat normal food or at desperate times even be able to swallow her own saliva. She would suffer from corneal abrasions which meant her eyes would be closed for three to five days at a time in a darkened room due to a tear on her cornea. Eliza’s mobility was affected, she required bandages and dressings all over her body every day of her life and she couldn’t wear normal clothes or undergarments because even the seams on the inside of the clothes would blister her skin.
 
Through it all, Eliza was amazing, she didn’t let her EB define her. Eliza lived with constant severe pain, yet she never complained. Eliza had such a positive attitude towards life and everything she endured.
 
It is estimated that there are around 1000 people in Australia who have some form of EB and over 500,000 worldwide. EB may not always be evident at birth. Milder cases of the condition may become apparent when a child crawls, walks, runs or when young adults become more physically active. 

The fact that EB is so rare means some doctors may not even be familiar with the condition. People with EB also often get skin infections and require prolonged antibiotic use.
 
Last December (2017) just six weeks short of her 18th birthday, sadly Eliza died due to kidney failure, a secondary complication arising from the condition. Her funeral was attended by 800+ people and that alone says so much about the gorgeous girl that she was, both inside and out.
 
I would like to raise at least $500 to donate to DEBRA (Dystrophic Epidermolysis Bullosa Research Association). DEBRA’s vision is to have a world where no one suffers from the painful genetic skin condition, EB.
 
Please click on the following link to watch a short video featuring Eliza and her amazing mum, Simone, where she talks about Eliza and living with EB. (This video was made In 2016 by the Brighter Days Foundation to advertise their annual fundraising event.)
https://youtu.be/RG-ubDCUxZQ

Please help me to raise as much money as possible to donate to assist the research to help find a cure for EB. Any amount that you are able to donate would be greatly appreciated.

Thank you for your generosity.

Kind regards,
Sean Wright.