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Monday, May 5, 2014

Farewell words for Ellie's Project...

The speech I gave at the end of the event benefiting Ellie and SWAN USA <3

I would like to take this opportunity to thank:

  • Brad, Jessica and Mathew...the loves of my life for helping to put on this amazing event
  • Discovery Village for always being gracious hosts and wonderful people
  • Chris Olsen at Fondi’s for donating all the fabulous food  
  • Stacy, Kim and Ericka for all their help organizing this event
  • My Aunt Sue for flying in from NYC to make most of the beautiful baskets you see
  • The beautiful and talented musicians -- Chris and Kirsten Gothold   
  • All of the people and businesses who so generously donated to the silent auction 
  • And, our very special community.
Some of you have been following Ellie's story since the beginning, while others are new to our family of supporters. Ellie is an extraordinary child. She is truly an angel sent here to teach us all about love, kindness and helping others. 

From day one we knew Ellie wasn’t going to be our typical child. With her beautiful uniqueness has come some heart wrenching fears that we never knew existed. A world where there isn’t always an answer. An unexplained disease causing a complex developmental brain disorder, heart defects, failure to thrive, hearing loss, retinal degeneration, cortical visual impairments, extremely small stature, developmental delays, sensory processing disorder, being unable to speak, unable to crawl or walk and 100% reliant on a feeding tube.

If this wasn’t our life and we were looking from the outside in, I would just think that maybe that family didn’t try hard enough. That maybe they just hadn’t seen the right doctor. Someone has to know, right? Well, we have traveled the country. We have seen amazing doctors at the National Institute of Health at the Undiagnosed Disease Program. We have been regulars at Seattle Childrens and Mary Bridge. We have seen the best of the best. I have researched top physicians and have gone as far as tracking them down on there home number and begging them to help my child. We are so blessed to have found the best of the best right here in Washington. Our geneticist Dr. Lawson Yuen. She even made it here tonight to support Ellie. Her support and brilliant mind has made this journey more bearable. We are one of the very lucky ones and I know that if there was an answer to be found, she would find it. 

But in the meantime we wait...days, months, years. Not knowing what to tell strangers when they ask. Not knowing what to tell our other children. Not knowing what to tell ourselves. Wondering what is the prognosis and is there anything we could be doing to make things better while time appears to be slipping away. But as dark and scary as it may seem, there is tremendous beauty that only a child of special needs can bring. Ellie is flawless. Her heart carries nothing but love. She may not be able to speak but she certainly communicates, and that is why we are here tonight. To be her voice. To help families make the journey into the unknown a little brighter whether that be through helping them find answers in costly genetic testing, providing medical equipment when insurance companies say no thank, or even just coordinating a support group where the hugs are free and the coffee is strong. We are not alone as we may feel and seeing this tremendous turnout proves this. 

Thank you all so much for choosing to be a part of Ellie’s journey and supporting us. 



Total amount raised so far...$8353 and growing :)