April 20, 2002 brought the arrival of a beautiful baby girl to the waiting arms of an eager family in Pittsburgh, Pennsylvania. Grace Elizabeth Ekis was joyfully welcomed into the world by her parents Brian and Tamara and big brothers Colin and Garrett. From the moment she arrived Grace captivated their hearts, completed their family. She was a happy, healthy baby and began to mature into the bright, kind and loving young child she would become.
Over the next few years, the Ekis family lived a normal life filled with traditional family happenings. Colin, Garrett and Grace continued to grow and brought much happiness and joy to their parents’ lives. This all changed on January 4, 2007, when Grace was diagnosed with a rare form of brain cancer called diffuse intrinsic pontine glioma (DIPG). The family was devastated. Their normal life was no longer; it was forever changed. Grace was given a grim prognosis of eight to twelve months to live, even with aggressive radiation therapy and experimental chemotherapy treatments. Upon receiving this dreadful news the Ekis family gathered around their youngest member, praying for a miracle, hoping that somehow the doctors were mistaken.
Throughout her illness Grace remained positive and, as always, full of life. She captured the hearts of her doctors and countless staff members at Children’s Hospital of Pittsburgh during treatments, exhibiting an extraordinary and courageous will daily.She captured the hearts of her doctors and countless staff members at Children’s Hospital of Pittsburgh during treatments, exhibiting an extraordinary and courageous will daily. Her strength improving, she quickly returned to regular attendance at her two most favorite activities -- preschool and dance class. The family traveled to Disney World for Grace’s first visit (“just to meet the princesses!” she said) and she continued to play in earnest with her best friends, Delaney and Kailey. As summer unfolded her health remained strong. She performed exquisitely in a dance recital, learned to swim, celebrated the 4th of July with the neighborhood, and joined her family for their annual vacation to their favorite North Carolina beach. Then in August 2007, Grace’s “lucky day” finally arrived – her first day of kindergarten! She had wanted to attend “real” school since she was quite young, eagerly anticipating the day she could ride the big yellow bus “just like my brothers Colin and Garrett.”
Sadly, shortly after the start of school, doctors informed the family that Grace’s tumor was growing yet again. Once more, there were very few treatment options available. She could not receive any further radiation therapy and there was no known way to stop the tumor from progressing. Although Grace participated in further experimental chemotherapy trials that fall, by Halloween doctors informed her parents that she would most likely not make it to Christmas. This horrific scenario did not affect Grace’s fortitude and she bravely soldiered on in battling the DIPG monster. She continued going to school, taking dance lessons, playing soccer, and even traveled to New York City with her family for a memorable weekend in November, all amid a myriad of doctor visits and chemo treatments.
Christmas arrived with Grace persevering, beating the odds of survival as predicted by her doctor yet fraught with the onset of side effects from the tumor. The family celebrated the season joyously and with great verve, thankful to have their precious Grace still by their side. ..in true Grace fashion, she simply switched hands and learned to write, draw and color with her left!But shortly thereafter her condition began to more rapidly deteriorate. She lost use of her right hand and arm; in true Grace fashion, she simply switched hands and learned to write, draw and color with her left! Her speech began to falter and she became difficult to understand; to help alleviate this issue, she began using sign language as an additional means of communication. She eventually lost all movement on the right side of her body; with great determination and insistence, she continued to regularly attend school and dance class, even from the constraints of a wheelchair. Her body was broken, but her spirit remained strong. In early February, she resolutely joined her kindergarten class for their “100th Day” celebration – what would be her final day of school.
Grace’s family watched as the cancer took everything that she loved to do away from her. In the last days of her life, she was unable to dance, color, write, and sing; in fact, she could barely speak, smile, eat, or even swallow. On February 14, 2008 – the day she called “I Love You Day” – the angels came and Grace danced her way to heaven. In her short five and a half years on Earth, Grace taught those around her the importance of loving life. Her infectious spirit will live on in the hearts of many.
As her family continues on their journey through life without her, they are inspired by the courage Grace exhibited throughout her illness. In her honor and memory, they were compelled to form the Reflections Of Grace Foundation. The organization’s charge is to provide assistance to other families in similar situations, spread awareness of the significance of pediatric brain tumors, and join others in fighting for better treatment options and increased research funding for all childhood brain cancers. All of this can be achieved if we truly “embrace our gifts” – for love, for hope….for Grace.