promo

 

Grace

Grace was diagnosed in January 2007 with a diffuse intrinsic pontine glioma (DIPG), an inoperable tumor located in the brainstem, at the base of the brain. Affecting primarily children, it is the rarest and worst of all pediatric brain tumors.  Approximately 150 to 200 children are diagnosed with this type of tumor each year, and survival time is typically just nine to twelve months from diagnosis. As parents Tamara and Brian Ekis felt an overwhelming sense of helplessness when doctors informed them there was nothing they could do to save their daughter’s life. Treatment options are limited and none offer a cure. Radiation and chemotherapy can be used in an attempt to shrink the tumor and reduce symptoms, but typically there is renewed tumor progression within six to nine months. There is no known cure for this type of cancer and there have been no advances in treatment options for more than thirty years.
About Us
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 Instrinsic 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.

 

Original Reflections Of Grace Logo