Sally Contreras via Crowdrise
September 24, 2012
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 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!
JACKSON GABRIEL SILVER FOUNDATION INC wrote -
About the Jackson Gabriel Silver Foundation:
The Jackson Gabriel Silver Foundation is a nonprofit organization founded by Alex and Jamie Silver, whose son Jackson was born with Epidermolysis Bullosa ("EB"), a devastating, painful, disfiguring and currently incurable blistering disorder that affects children from birth. JGSF funds scientific research with the goal of treating and curing this devastating disease. To date, JGSF and affiliated funds have directly raised over $850,000 and have been instrumental in securing over $28 million for EB research. JGSF has given grants to support the promising therapies at leading institutions including Stanford University, the University of Minnesota, the University of Southern California and others. Please visit www.jgsf.org to learn more.
About Epidermolysis Bullosa (EB):
EB is a debilitating and devastating genetic disorder that affects a child from birth. EB is extremely rare - a child has 1 in 50,000 chance of being born with EB - and EB is not specific to any ethnicity or gender.
EB is technically defined as a group of diseases characterized by blister formation after minor trauma to the skin. Practically speaking, a child who suffers from EB lacks a critical protein that binds his or her layers of skin together. This protein acts as the “velcro” that attaches one layer of his or her skin to the other. Without this “velcro,” when this child moves, his or her skin slides apart, blisters and shears off leading to severe pain, disfigurement, and in too many cases, a premature death. A child with a severe form of EB can have a 60% cumulative risk of dying by age 15 and nearly a 100% chance of developing an aggressive, painful and fatal form of skin cancer over the course of his or her shortened life.