The details are staggering, incomprehensible even:
...fewer than two hundred cases each year in the U.S.…close to 0% long-term survival rate…odds similar to being struck by lightning......lucky to survive just one year – if you submit your child to treatments which may themselves cause irreparable damage…if not treated, then maybe two months...
That is what parents of a child diagnosed with brainstem glioma are told. Reality quickly becomes apparent that children with this type of cancer have no real chance. You have no true options, no proven alternative therapies that can help. Current treatment protocol for this type of tumor has not advanced significantly in more than 30 years. So you submit. And you fight. And you fight some more. And then, near the end, they tell you that there is nothing more you can do. There is no more fight - it is just time to take your child home...
Quite simply, this is unacceptable...it must change.
Formally established in late December 2008, the Reflections Of Grace Foundation is the result of nearly a year of deliberation, discussion and planning. After the death of their five year old daughter Grace Elizabeth on Valentine’s Day 2008 to a particularly virulent form of brain cancer, co-founders Tamara and Brian Ekis decided to channel their grief in a positive way by establishing an organization devoted to making a difference. The foundations’s name, Reflections Of Grace, signifies the effect their daughter had on the lives of those she touched over the course of her short life. As its mission, the Reflections Of Grace Foundation is dedicated to:
- Providing financial, emotional, and educational support for children and their families affected by pediatric brain cancer.
- Raising awareness of all types of pediatric brain tumors, with a particular focus on Diffuse Intrinsic Pontine Gliomas (DIPGs), or Brainstem Gliomas
- Joining with other like-minded organizations in educating, aiding and funding the search for a cure for DIPG and other forms of pediatric brain cancer, in the hope of curing all cancers.
The foundation was officially approved as an IRS 501(c)(3) charitable organization in March 2009. Through various benefit events, fundraising programs, merchandise sales, and direct donations, the foundation continues to work diligently with the aim of fulfilling its mission.
