Hope was a beautiful presence in our lives.  She came home from Korea at almost 7 months old to our family and grew into a healthy, happy, smart, sassy, empathetic, musical, theatrical, kind and caring girl.  On July 29, 2009, just 3 days after she finished her role in Beauty and the Beast, we heard the words no parent ever wants to hear.  The doctors said - "this is the worst diagnosis we can give a parent" and with that we became a family whose child had Diffuse Intrinsic Pontine Glioma (DIPG), which is a tumor in the brain stem that has no treatment other than palliative radiation.  There are many phase 1 and 2 clinical trials, but there are no drugs currently available that have proven to be consistently effective with these tumors.  Not knowing anything about childhood cancer, that its research is horribly underfunded, and never having heard of this awesome foundation, our motto became: “when life hands you lemons make lemonade!”  We tried to use every trip to Chicago for clinic visits/treatment into something positive by making as many memories as Hope's strength would allow us to.  Hope fought bravely and with dignity for 224 days before she lost her battle. Hope waited until I fell asleep and on March 10, 2010 she went to heaven and is DIPG free!  As of today, July 12, 2011, she has been gone 1 year 4 months and 2 days.  She is a hero. She is our hero. 
 
Website: www.alwayshavehope.org

 
Written by Deb Fuller, Hope’s Mom
July 2011