Run for the eternally brave

Epidermolysis Bullosa, commonly known as EB, is a genetic condition characterized by the presence of extremely fragile skin – so fragile that the slightest touch can result in painful blisters and open wounds and in some forms much worse.

Skin is affected by simple changes to weather, too much activity in one day (running, walking, playing with toys), everyday heat, friction, & even minor chaffing from the seams in clothing.

The skin has two layers, the outer layer is called the epidermis and the inner layer is called the dermis. Normally there are anchors between the two layers of skin that prevent from them from moving independently from one another. People who have EB do not have these anchors, and any action that creates friction between the layers will create blisters and painful sores.

With EB, life’s normal activities cause blisters similar to the pain of 2nd and 3rd degree burns. A reason why it is known as the ‘worst disease you have never heard of’. EB is not contagious. It affects both genders, and occurs in every racial and ethnic group throughout the world.

In many countries, butterfly children is a term often used to describe younger patients because their skin is as fragile as butterfly’s wings. Sometimes people with the condition are also described as cotton wool babies.

So far there is no cure to EB.

Eternally Brave run is birthed out of the love for our boys. My name is Jacqui and alongside my husband Brenden we parent two gorgeous children Jayden and Jentzen. Both our boys were born with Epidermolysis Bullosa. 

Many people would not even notice that our boys have this condition because you always see a smile on their face, and they do the best they can to be like everybody else their age even in the midst of pain.

Sometimes they are noticed because often their hands and feet are bandaged or they have blisters on their face around their mouth, nose or across the neck, they may not be wearing shoes but slippers instead or they may even be walking with a limp.

Our reality is that most days; morning and night we have to use needles to burst blisters, apply pressure to drain them, use ointments/antiseptics and bandages to care for them.

It is an extremely painful process for them and a very emotional journey for our family and for families like ours who have this condition.

We will be running a half marathon of 21 kms on March 26th 2017 with a few friends in Sydney, Australia.

We are running for three objectives;
1. To raise awareness of this condition
2. Raise funds to help research towards finding a cure.  www.blisters.org.au ‌
3. Raise funds to assist the work of DEBRA who provide support to families with this condition. 
 www.debra.org.au ‌

Two ways you can participate;
1. Share this gofundme page on your social media account to help us raise awareness. 
 https://www.gofundme.com/run-for-the-eternally-brave ‌
2. Donate to this page so we can further advance research and support for families on this journey. 

Together we can make a difference. 

All our love and thanks,
Jacqui and Brenden xo