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Finally - Updated Blog - A Summer Of First!
August 25, 2016

We’ve had a Summer of firsts! It’s been a little crazy around here and Bee’s skin is starting to show some signs of “wear & tear”!  See more

BENEFITING: EB Research Partnership

ORGANIZER: EB Research Partnership

EVENT DATE: Jan 04, 2017

Sally Contreras

THE STORY:

http://biancasnewadventures.blogspot.com/

So many times when I’ve said my daughter has a skin condition people always seem to assume she’ll be fine or it will go away as she gets older. As positive of a person that I am the real truth of the matter is that it will not go away. Yes she’ll be fine but not because her skin disorder will disappear as she gets older. She’ll be fine because we’ll teach her how to handle herself, how to make the right decisions for every day tasks like eating, brushing your teeth, washing your hands, cleaning your face, taking certain medications, doing routine wound care – in other words personal hygiene & care. Plus we’ll teach her that she’s not alone in this world when it comes to EB. We will make her aware that there are, by far, many people out there also dealing with different conditions – be it physically or mentally. I always take a moment to point them out to her on TV or in the real world – just so that she can see she’s not the only one dealing with a special condition.

When Bianca was born 13 years ago she was missing skin from the top of her knees to the bottom of her feet. She was also denuded of skin on her right hand. Plus a wound on her lower back the size of a silver dollar & not to mention the involvement in her mouth. We had our work cut out for us when we brought her home. They did skin grafting on both legs so that she could have the upper hand in the wound healing department. Her healing ratio after 3 months was that of someone whose wounds have been healing for 9 months with 30% closure. This played a major role in getting those areas of her legs healed up to avoid infections like pseudomonas.

As time has progressed we have learned to pick and choose our battles against this never ending war with EB. Our philosophy pretty much is if it doesn’t bother her than it doesn’t bother us. So if she has a limp on her left foot because it is clubbed but she can still get around with no complains then why put her through the ordeal of surgery after surgery? With the possibility of the skin in that area either taking months/years to heal or never healing again? Right now it’s been a close/wound-free area for years. However, that frame of mind will quickly shift if she’s coming over repetitively complaining about pain and discomfort. But for now the risks of putting her under is not worth the trouble. Same goes for her mouth – yes she has some involvement and yes it looks real bad sometimes – but honestly she’s gone weeks even months without having food stuck in her throat. And when it has happened is because Bianca was being her usual demanding and determined self and she took a bite of something hard, sharp and not easy to swallow. The simple fact that she’s super active and is currently in a normal weight/height range is proof enough that we can hold off on any surgeries just a bit longer ~ taking a moment here to say **Thank You God, Jesus Christ & The Holy Spirit for allowing us to go so long without a dilation or any other major medical procedure, Amen** . 

The amazing part is that even though Bianca has faced or is facing so many obstacles she still manages to put a smile on our faces every day. She’s a normal child with a skin condition, but she’s a normal child. I am sure those that know her will agree she has the energy to keep going, to not back down…such a zest for life! As I’ve been told before by someone who has the same type/sub-type of EB as Bianca (and who’s also a mother/wife/daughter/friend) “Bianca has spunk”! And that is something that, along with her “skin condition”, will never go away unless we can raise enough funds for EB research - then maybe one day we will not have to face all these obstacles on a daily basis! THANK YOU for reading a bit of our story!

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~EB RESEARCH PARTNERSHIP

We are working to treat and cure EB as quickly and efficiently as possible. We fulfill our mission by partnering with non-profit and for-profit entities and individual donors, as well as with the EB and research communities.

We are the largest nonprofit dedicated to funding research aimed at treating and ultimately curing EB, a group of devastating and life-threatening genetic skin disorders that affect children from birth.

Leading researchers say treatments and a cure for EB are within reach—for Shane, Ryan, Jackson, Michael, Jennifer and every other person suffering from this horrific condition. Though we have made significant progress, we need much greater resources in our pursuit of a cure.

Partner with us in our mission to further life-saving research.

http://ebresearch.org/

https://www.youtube.com/watch?v=qz0QeSCWif4

http://www.thedoctorstv.com/videolib/init/10096

DONATE

To This Fundraiser

$1,000

MONEY RAISED
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  • Anonymous

     

  • Christy Jacomino

    $25

  • Roxy Contreras

    $50

  • Tina Parsons

    $25

  • Melissa Lawrence

    $25

  • Marynell Lubinski

    $25

  • Sparky Glasson

    $50

  • Nicole Albarano

    $40

  • Brian Irvine

    $50

  • Lynn and Jerry

    $20

  • Vanessa Franco

    $25

  • Liz Beall

    $100

  • Rais

    $100

  • Kaya Lemoine

    $25

  • Vanessa Bartoli

    $25

  • Maria Mojica

    $25

  • Mauricio Dugand

    $25

  • The Johnson Family

    $25

  • Amelia & Jaime

    $50

  • Karina Macchiavello

    $25

  • Maria Fleita

     

  • Marlene Rodriguez

     

  • Frank Alvarado

    $50

  • Adam Crowell

    $50

  • Judy, Carlos & Kayla

    $105

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100% Raised of $1,000 Goal

Fundraise for this Campaign

The Team: $34,162 TOTAL RAISED SO FAR

JOIN THE TEAM
Fundraiser Title

EB Research Partnership

Amount Raised

$6,000

Fundraiser Title

Patty and Keith Bevacqui

Amount Raised

$5,000

Fundraiser Title

Francoise Cherry

Amount Raised

$2,260

 

75% Raised of $3,000 Goal

Fundraiser Title

Jeff and Maureen Berger

Amount Raised

$1,910

Fundraiser Title

Faye Dilgen

Amount Raised

$1,746

Fundraiser Title

Abbie Levine

Amount Raised

$1,650

Fundraiser Title

Jess Matts

Amount Raised

$1,100

 

110% Raised of $1,000 Goal

Fundraiser Title

Lucy Schwarz

Amount Raised

$1,035

 

104% Raised of $1,000 Goal

Donor Comments

Judy, Carlos & Kayla

Judy, Carlos & Kayla

DONATION: $105

Praying that every little bit helps :) 7 months ago

Adam Crowell

Adam Crowell

DONATION: $50

7 months ago

Frank Alvarado

Frank Alvarado

DONATION: $50

7 months ago

Marlene Rodriguez

Marlene Rodriguez

7 months ago

Maria Fleita

Maria Fleita

7 months ago

Karina Macchiavello

Karina Macchiavello

DONATION: $25

7 months ago

Amelia & Jaime

Amelia & Jaime

DONATION: $50

7 months ago

The Johnson Family

The Johnson Family

DONATION: $25

Good luck, Sally girl!!! 7 months ago

Mauricio Dugand

Mauricio Dugand

DONATION: $25

7 months ago

Maria Mojica

Maria Mojica

DONATION: $25

God Bless you and your family 7 months ago