Isla the EB Warrior

Felicia and I met in our early 20's. We were roommates and we immediately became close friends. (We found her on Craigslist, believe it or not!) I have some great memories with this woman, and have loved watching her journey over the years.



Fast forward to present life, she is married to Kody and they have a beautiful little girl, Isla, who just turned ONE!! She was born with a rare genetic disorder, EPIDERMOLYSIS BULLOSA. 




Here are some words from Felicia about Isla's disorder.

Isla was born with Junctional EB. EB is a rare genetic disorder that affects the body’s largest organ: the skin. Her body is missing a critical protein that binds the skin’s two layers together. Without these proteins, the skin tears apart, blisters, and shears off easily.
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Some fun facts about EB:
*EB is not contagious
*Isla’s form also affects her internally
*EB is not specific to any ethnicity or gender
*EB is a chronic disease
*There are 4 types of EB: EB Simplex, Dystrophic EB, Junctional EB and Kindler Syndrome
*EB is an extremely painful disease
*Isla will not grow out of this
*There is no cure. Only management through special bandaging
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To manage Isla’s EB we must do daily wound care that takes around an hour to complete. Isla’s blisters must be popped, drained and dressed with special bandages. We must check all wounds for infections daily and make sure they always remain clean. We use a multitude of topical creams, as well as prescriptions to try to manage her pain and itch.

Here is a video or a snippet of Isla's daily life...

https://www.facebook.com/felicia.a.eldred/videos/10212725381839959/
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Isla has a gastrostomy tube (g-tube) to insure that she continues to get proper liquids and nutrients when she’s unable to eat by mouth. She also wears specific clothing to prevent injuries from friction, etc.
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I've been following their journey since Isla was born and I am always overwhelmed with news that they report, the good and the bad. I am smiling when they are smiling and crying when they are crying. Her parents are amazing individuals and Isla has the best support team any child could ask for. Her smile twinkles like one I haven't seen and it makes my heart ache knowing she is going through this, EVERY SINGLE DAY. How strong this little girl has to be living with EB.



Being first time parents is hard enough, and then adding on something so unexpected. I cant even begin to imagine the amount of medical related finances that accumulate on a daily basis. Aside from normal living expenses, and we all know how rough that alone can be sometimes. 

Because they have touched my heart so deeply with their story, I want to rally behind them, spread awareness and let them know WE ARE HERE FOR THEM, in anyway we can be. What better time of the year than the season of giving!

So I ask that you join me and donate a little bit of love to this amazing family, so maybe this holiday, they will have one less thing to think about.

Merry Christmas and Happy Holidays!




More info about EB;

An estimated one in 17-20,000 live births are affected with some type of EB. The statistics indicate that, on average, only nine people out of 20 born with EB are living today, which illustrates the deadly reality of this disease! A person with severe EB experiences more pain in one week than the average person does in a lifetime! Scientists have located the genes and proteins that are defective in this disease. Their current research is to identify ways to repair the genetic mutations found in EB patients, without accidentally activating cancer-causing genes. They are also seeking ways to effectively treat the disease and its often lethal complications. At present, the only treatment available for EB patients is to protect vulnerable skin with soft, nonadherant dressings, and treat wounds and infections as they occur.

If you'd like to learn more about EB, here is a link https://www.ebresearch.org/