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EBManRunning

Organized by: Julio Diaz

Julio's Photo
 

Oct. Marathon! Was a success! Thank you to all of you whom supported our mission.
October 14, 2016

Thanks Therese, Mykell, Jacqui, Adam, Esther, Skye, Hendersons, Perez, Amezcua and all the supporters we had through our mission and specially See More

THE STORY:

Wikipedia definition {Dystrophic epidermolysis bullosa is an inherited variant affecting the skin and other organs. "Butterfly children" is the term given to those born with the disease, as their skin is seen to be as delicate and fragile as a butterfly's wings. Dystrophic epidermolysis bullosa is caused by genetic defects (or mutations) within the human COL7A1 gene encoding the protein type VII collagen (collagen VII).[11] DEB-causing mutations can be either autosomal dominant or autosomal recessive.} WHY SHOULD YOU HELP REACH OUR GOAL: I'm blessed to share my existence with all these butterfly angles, Angles walking in pain day in day out. Their hearts and spirits pure with bright light and the will to fight for their present day and their future. Samuel was born with a genetic skin disorder that causes an enormous amount of discomfort, pain that I'm not able to process. I would be foolish to even say or think I know what he goes through. Not good with words nor writing papers, especially to ask for help/support. Today I set my pride aside and I'm reaching out for your support to help better Sam's life. Over the past few years Sam has been battling more chronic wounds and infections and his bath process causes him a great deal of anxiety and pain. Our goal: Our goal for this fundraiser is to provide Samuel with a new bath that will help his wound care process to be less stressful and will be more efficient in cleaning his wounds. We will be installing a bath with a technology used among a few other EB patients that has been shown to be beneficial {www.jasoninternational.com/}. All funds generated will go towards the remodel of Sam's bathroom and installation of the new bath tub. We are setting our goal high and if anything is leftover it will go into Sam's medical fund for future wound care expenses. Benefits: Cleaner healthier skin, less chronic wounds, healthier process of wound healing, less wound bacteria that causes chronic wounds, and most importantly a smile hopefully during bath time instead of tears. The cons to this goal, it's expensive and we need a complete bathroom remodel. In return I will be running the Spokane Marathon October 9, 2016. I'll be running and dedicating this run to all our donors/supporters. I understand if no donations can be made, please spread the WORD of EB when you can. Help us raise awareness for this rare condition so we can soon be closer to a treatment or cure! For more information about Epidermolysis Bullosa please visit www.debra.org or ebresearch.org. Thank you for your time, be well, and cheers to life! Julio C. Diaz EBRunningMan diaz_184@hotmail.com

$700

 

7% Raised of $10,000 Goal

  • Adam Brunnemann

    $500

  • Therese, Mykell & Jacqui

    $100

  • Tracey Taylor

    $100

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Organized by

Julio Diaz

This is a direct to organizer fundraiser.

Donor Comments

Tracey Taylor

Tracey Taylor

DONATION: $100

2 years ago

Therese, Mykell & Jacqui

Therese, Mykell & Jacqui

DONATION: $100

Love you guys!!!! 2 years ago

Adam Brunnemann

Adam Brunnemann

DONATION: $500

Love you guys!! 2 years ago

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