Ten years. It has been ten years since Emily, our beautiful, brave, spirited little girl, passed away. If you don't know her story, here is the short version:
When she was 15 months old she was diagnosed with an atypical teratoid rhabdoid tumor (ATRT) while we were on vacation in Savannah, GA. We spent a month in intensive care in Savannah. One month literally fighting for her life, racing to scans, waiting for news of surgeries, holding her close, praying for the opportunity to get a handle on what this ATRT monster was, and how we could get her through it. Once we had her reasonably stabilized, we decided to get her treated in the one place making progress with ATRT, Boston Children's Hospital.
With the help of an amazing staff of doctors and nurses at Boston Children's Hospital, Emily fought her brain tumor with courage and grace for a year. We learned so much about our family and friends and....ourselves. The doctors and nurses also learned from Emily. They learned things that would help others facing this terrible monster. Emily had good days and bad days. She even smiled and cooed around Christmas, two things we literatly never thought were going to happen again in Savannah. We found out on March 28th, 2009 that the tumor had spread and that the situation was unmanageable. On March 30, two days later, she was eternally healed and passed away.
That was 10 years ago but feels like yesterday. She is missed more than words can describe. We will work to raise awareness and funds for brain tumor research, in her memory, until we find a cure which is why we have done this walk every year since she passed away.
We love and miss you so much, Emily. You are with us constantly in our hearts and minds. This will be our 10th year participating in the Race for Hope. Join us to walk in honor of Emily and all of the other ATRT warriors we've lost, and those still fighting.
The Race for Hope - raises funds to support innovative research initiatives and provide information for brain tumor patients and their families. This amazing event relies on the dedication and enthusiasm of individuals, families, teams, volunteers, sponsors and donors. Thank you for your support in helping us find a cure for brain tumors!