KD Sunday Spotlight: Reflections of Grace turned pain into purpose and helps those battling pediatric brain cancer
PITTSBURGH (KDKA) - Around the home of Brian and Tamara Ekis, you'll see Grace Ekis's favorite purse on display, photos on the wall, and reflections of Grace everywhere.
She's Brian's and Tamara's vivacious daughter.
"It's almost like she knew what time people were coming home from work because she would be out there dancing up and down the stairs, in the driveway, and people would people would slow down, as they came past the house," said Tamara. She continues to describe her child as 'wise beyond her years'.
However, she didn't get many years, because Grace passed away at just 5 years old from DIPG. It's a fatal brain cancer with no cure. It had spread throughout her brain and doctors call DIPG the "rarest and deadliest" of brain cancers.
Tamara said the diagnosis all started with one symptom.
"She said she was wobbly, and she had fallen a couple of times. You know, we knew that it was time to take her to be seen," said Tamara.
In 2007, they moved quickly with Grace at Children's Hospital in Pittsburgh, to uncover the deadly diagnosis.
"I can clearly remember every single part of that day. You know, I can tell her exactly what she had on. I can tell you exactly what I had on because it is something that is indelible in my mind," said Tamra.
With no cure, her parents chose to treat Grace, which bought them 13 more months of memories, princess parades, and a Disney trip.
However, Grace danced to heaven on Valentine's Day, in 2008.
"It's not a feeling or an instance, or an experience you would wish on your worst enemy," Tamara continued to tell us, "It's been years since this has happened to us and those feelings will never go away."
"On Valentine's Day, which she called 'I Love You Day' we celebrate I Love You Day every year," Grace's father, Brian said.
Now it's not a random day to remember her passing and it's not a random mission for their non-profit named Reflections of Grace.
"We have been able to help hundreds of families across the United States," said Tamara. More than $870,000 dollars have now gone to others in Grace's memory.
"We have been able to help people pay mortgages and be able to spend time with their children and fix their cars so they can go to treatment," Tamara explained.
Through this non-profit, Grace's light shines bright and the Ekis have collaborated with other non-profits to move the needle forward on pediatric brain cancer research nationwide, to help find a cure.
Brian said he made a point to "stop and pause and remember her (Grace), and that she's the reason we're doing this."
"We will do this until we get there," Tamara explained.
Reflections of Grace focuses on supporting research, raising awareness, and supporting families financially and emotionally who have children with brain cancer.
Tamara said they cannot do this alone, and they have an amazing team, which is 100% volunteer-run.
"The community support has been the biggest thing moving this foundation forward," Brian told us.
Since 2008 the non-profit has held 15 years of the Race for Grace event, golfing fundraisers, and other fundraisers.
Now Grace's work isn't done with her legacy, as her parent's mission.
Moving forward, the Reflections of Grace Foundation will hold its 16th annual race this April. It's expanding the race; along with increasing fundraising; looking for more sponsors; and more research on pediatric brain cancer.
Tamara even spoke in front of the Senate in October to advocate for opening access to therapies for people with rare, progressive, and serious diseases.
You can learn more about their mission and their work on their website at this link.
