Thursday, July 5, 2012

Support for Debra Canada

I'm not one to ask for much other then a hand to keep Ren and I from disaster during dressing changes.  ie marital stress.


Debra Canada, which I am a board member is holding The 2012 Debra International Conference.
It is a meeting of minds and science that is very much needed in this family altering, life threatening rare disease. Please see  September Program

Last years meeting in the Netherlands was very important to me to see what exactly I'm up against as a father and caregiver for a child with EB.  I admit there were many moments where science and gigantic words based in a language hardly anyone speaks anymore, well Doctors, Scientists and Priests.

Anyway, this years line up looks to be very interesting and seemingly more interesting for the family care giver.

If anyone has thought to help out Raquel by any means, this is your opportunity.
Please help us board members find a way to grant all our requests from stricken families to being able to get the best minds together and share their knowledge amongst each other and families like mine.

Tell Erin and the Board that it's from Raquel, your EB hero.

Donate to

Now insert heart wrenching video of Super Kid getting a large blister lanced and drained.

I have to admit having watched it now from a video that is just over a year old, what I've learned over the two years there are many things different in how the wrap and draining procedure takes place now.  At least I have larger needles and great scissors (donated to Raquel from her plastic surgeon). Notice the sound of Cordelia unfazed bouncing a yoga ball in background.

But make no mistake, it's just as grewsome and just as painful for everyone doing the work and poor poor Raquel.  Hope this pulled at some heart strings.

It would be so nice for this years Presentation and Gathering be the best it can.

The Moja Coffee barista's have certainly been doing their part as they've raised another $1000 +.

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