Reflections Of Grace Foundation Raises Awareness, Keeps Legacy Alive

Grace Elizabeth Ekis lived a short life filled with lots of love, leaving a legacy that lives on through friends and family in a foundation created in her honor.

“She ultimately lost her battle in February of 2008, on Valentine’s Day, or ‘I Love You Day,’ as she called it,” said Ashley Metz Leax, 26, of North Huntingdon. “She was a very loving child and she just loved that day. Her mom says that was the day that Grace danced to heaven.”

While Grace was diagnosed with a rare form of brain cancer in January 2007 at the age of four, Leax, a family friend and graduate, helped others to create the Reflections Of Grace Foundation.

The supporters came together to help the Ekis family with medical costs before the foundation formed, and now focuses on raising awareness and funds for research surrounding the disease with Reflections Of Grace, which is called Diffuse Intrinsic Pontine Glioma.

“It’s the rarest and worst form of pediatric brain cancer,” Leax said. “It strikes children between five and 12 and so far, no one has ever survived this—there is very little to no treatment options for these children so when they are diagnosed, they are given very little hope.”

Each year, the foundation holds a Race for Grace, which originated at Woodland Hills High School as the Ekis family lived in before moving to North Huntingdon, in addition to a Golf for Grace event and Breakfast with Santa.

During her battle against DIPG, Grace underwent radiation at Children’s Hospital, which allowed her life to be extended by about a year and one month. She died at five years old. Doctors also can present experimental chemotherapy treatments but they don’t know what causes this form of brain cancer and therefore it’s hard for them to treat it.

“They are at times meant to be for adults but as a last attempt or act of desperation, they try them on kids hoping to see results,” Leax said.

Leax’ mother worked at a daycare center where the family quickly connected with the Ekis children, including Grace. While Leax was in high school, she would come to the daycare after school, which is when she first met the little girl that would touch her heart.

“Just having this strong connection with them—your family is your blood family and you meet friends along the way that become a second family and that is what they are to us,” Leax said. “When we found out she was diagnosed, mine and many other families were heartbroken. I know her parents felt helpless because the doctors were saying there was nothing they could do. That’s just heartbreaking and they were devastated.”

Leax and others quickly decided they would not sit back and do nothing as the rest of Grace’s journey unfolded. The idea for the Race for Grace was born, and that December, more than $11,000 was raised after just six weeks of planning for the event. Half of the funds went to the Ekis family, while the rest was given to the Child Life Department at Children’s Hospital by the family’s request.

“My sister took the idea to a student leadership class at Woodland Hills and the teacher let her take it on as a class project,” she said of the 2007 race. “We had to do it then because we were in a situation where we thought she may not make it through Christmas.”

In 2008, Grace lost her life. The family and her friends were at a turning point filled with broken hearts. That is when the foundation was officially formed.

“It took a long time to figure it out—you’re living with this hole in your heart now and trying to move forward,” Leax said. “Grace was so inspirational and wise beyond words, and so insightful, and we wanted again to try to live in a way that would make her proud and help other families going through this.”

While the organization realizes that there already are nonprofits dedicated to cancer research, the group wanted to make sure that all funds from Reflections Of Grace would specifically go to DIPG research, because the rare form of cancer continues to be fatal.

“Since there have been no advancements in the last 30 years, we just feel that is unacceptable,” she said.

Tricia Mahlstedt of Forest Hills has known Grace’s parents for about 11 years and knew the young child as soon as she was born. Mahlstedt became involved with Reflections Of Grace for many reasons.

“She was such a beautiful, wonderful little girl, and for her to suffer from this horrible disease was just unbelievable,” Mahlstedt said. “Second, because when I think of Grace and the other children who have suffered from DIPG, I realized that this disease could strike any child, including my own children. With no known cause and no known cure for DIPG, that made me feel so helpless—I definitely felt helpless to do anything during Grace's illness.”

Working as a board member and on the Race for Grace and other events has helped her to feel like she can make a difference.

“I'm honored to be a part of Reflections Of Grace,” she said.

While Reflections Of Grace prepares for its next fundraiser Nov. 26—Breakfast with Santa—Leax is waiting for the day when the organization will no longer be needed.

“It’s humbling to see what we have helped to create, however, I wish every day that I did not have to do this,” she said. “I spend hours every week devoted to this but I wish we could trade all of this and have Grace here, because our ultimate goal is to have no need to have this. I would gladly trade this to have Grace with us, but that isn’t possible—but you put one foot forward one step at a time and extend Grace’s legacy.”

For more information or to get involved, visit http://reflectionsofgrace.org/.