Wings for Layla: Walking for EB - 2009 Event

October 25, 2009

WHAT A GREAT DAY!

Here are the details on the event from our caring bridge entry (see Meet Layla to go to site). 

Here is a slideshow of the event:

 http://www.vimeo.com/7787935

In one simple, yet very powerful word, we are truly blessed.  We’ve always known this, but the “Wings for Layla: Walking for EB” fundraiser on Sunday was confirmation.  To see a thought progress into a day filled with interaction, fun, children, fellowship, and walking, was priceless for us.  As I mentioned in my brief intro to the event, Jen and I are forever committed to two things:  1) Raising awareness of EB throughout the community; and 2) Raising funds to help support finding a cure, and treating EB.  When all was said and done, we had over 300 strong attend our inaugural event, with over 50 children!   Seeing you all walking in the gym was very emotional for us both.  Seeing all of the children wear the butterfly wings was precious.  Knowing you were all there to help us and Layla out brought chills to our bodies.  Knowing that we are blessed to have Layla in our lives, leads us to thanking the man above for this gift.

You may wonder who was in the audience at the event?

·         Our parents, family, and extended family

·         Our friends – on multiple levels, including friends from our much younger days (for me, friends from high school days at Menomonee Falls)

·         Jen’s extended family who drove in from Durand to help (4-1/2 hours away!)

·         Our “other” friends, defined as our co-workers at Kohler – this group came out in full force!

·         Dr.’s & Staff from Children’s Hospital who have treated Layla from her birth, and continue to care for her

·         5 families who are affected by EB

When Jen and I had a chance to process the event on Sunday night, we couldn’t believe how much it resembled our wedding.  There were so many people we wanted to say “hi” to and catch up with, but the day absolutely flew by and at the end of it, we were exhausted, yet glowing from such a fun, inspiring day.  It was a good day all around as the Packers came through with a much needed “W” heading into their huge match-up with Brett and the boyz from Minnesota. GO PACK GO!

Oh yeah, I almost forgot the part that many of you are probably the most interested in – was the event a success?!?!  A drum roll please…together, WE DID make a difference as we raised a whopping $14,839.55, after expenses were subtracted!!!!  We said from the start that the majority of the funds raised will go to finding a cure for EB and we will follow-through on that commitment.  We’ve decided to allocate the funds in the following manner:

Recipient                               %Allocation               $Amount
dEBra                                       50%                          $7444.78
Children's/Tables                    30%                          $4466.87
Layla                                        20%                          $2977.91
         

Fifty percent of the proceeds will go to dEBra and their incredible mission of finding a cure for EB.  Thirty percent will be going to Children’s Hospital as they start to build a dedicated program to support EB children within the Dermatology department.  Also, Jen’s Father has graciously donated his services to build additional “lazy Susan” dressing change tables for families with EB in Wisconsin.  The remaining twenty percent will go towards caring for Layla, her ongoing expenses, and for future specialized clothing.  More to come on this next entry!!

An event of this magnitude takes a lot of help, a lot of support, and many donations to pull it off.  There’s so many people we need to thank, and I know we will inadvertently leave a few out so our apologies in advance:

·         To our families and friends for helping out before and after the event

·         To our Sponsors – We ask that you please support these wonderful businesses within our community: