Welcome to Hope Rising!

'When you have come to the edge Of all light that you know, And are about to drop off into the darkness Of the unknown, Faith is knowing One of two things will happen: There will be something solid to stand on or You will be taught to fly'
Author Unknown.

Through this journey, no matter what we've faced....our Faith has taught us how to 'stand' and 'how to fly'

Please join us on our journey of Hope. Some times we are 'standing' and some times we are 'flying' - but one thing is for sure....our two amazing children (Will and Sasha) have been the biggest blessings in our lives.
While they struggle through life-threatening illnesses, they also show us how incredible life truly is. Their joy, laughter, fierceness, and tender spirits lift us and carry us through any storm we've had to weather!

Wednesday, March 25, 2009

A Journey of Hope

4:00 came WAY too early this morning. The alarm urgently reminding me that I needed to beat feet and get moving as the day would not wait for me to finish my slumber (and a nice one at that!).

As I drove to Michelle's house, the world around me was quiet and different than I am used to seeing. As we embarked on our journey to DC via train, I felt a great deal of excitement and Hope for what was to come.

The reality of the impact that our voices can have on so many lives was starting to settle in through the fog of the morning and it truly felt good to know that we were going to be a part of something bigger than ourselves...bigger than Team Hope...something amazing.

As I sit here watching the world go by out my window, I wonder if the change we wish to see will be the change that comes to pass. I hope it's even BETTER than what we envision - and I have great faith that our goal will be achieved this year.

We have been blessed to have great health care, great insurance, great support, and great physicians. I count those blessings every second of every day for I know we are among the few that have all of these things...and I feel compelled to fight for those who do not have the voice I have, that do not have the health care we have, that do not have the insurance we have, that do not have the support that we have...that do not have the great physicians we have.....for I believe EVERYONE is worth the fight and worth the cure.

This trip is more than *just* meeting with legislators - it's about being able to share our journey through PIDD and help them to realize the great need that is out there for better access to life saving treatments...and without those treatments we would be facing dire consequences - and some patients will (and have) even face death.

Our words have the power to *change* the lives of those in need - and there is NO greater responsibility and honor to do so than this.

It is with great hope that I end this note - Hope for funding, Hope for support, Hope for better treatment, Hope for great success....and, as always, Hope for a cure......

Thanks for sharing the Journey of Hope with us...


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