Esther Viola Frey, two years old, passed away from complications from her rare genetic disorder, trichothiodystrophy, on June 13, 2020. During Esther’s short two years, she was a brave, tough, loving, and adventurous person, who unfortunately had long-term hospitalizations. Esther had a spark to which people reacted. Truly, she never met a person who didn’t instantly become her friend.
Esther always had a smile on her face, even during her countless doctor appointments, therapies, and few surgeries. She loved dressing-up, being fancy, Spot books, flowers, pinks and purples (hence the website color), and surprises. Most of all, she loved her big brother Billy. Esther was strong, even though she never weighed much more than 13 pounds. She was a force to be reckoned with, in the best way.
Due to her condition, Esther had long-term hospital stays at the Ann & Robert H. Lurie Children’s Hospital of Chicago. Many of those stays came without any notice - a trip to her primary care physician suddenly ended with an extended stay in the hospital. Without notice, her parents scrambled to stay with Esther and gather the necessities that would make her stay more manageable and comfortable for her.
During these hospitalizations, her parents were saddened to see how financially draining long-term hospitalizations could be on the entire family, including the cost of food and parking. This is of course, over and above the actual hospitalization cost. Similarly, for the children who unfortunately did not have visitors, there was only so much the Child Life Specialist, whose job includes spending time with children during their hospitalizations, could do to make the children’s time in the hospital a little less lonely.
After Esther’s passing, her parents wanted to honor Esther’s memory in a way that was fitting with her life. Thus, Esther’s Friends, The Esther Viola Frey Memorial Foundation was born with the mission of helping children, and families of children, facing long-term hospitalizations.
There will never be another Esther, but her memory lives on through Esther's Friends and all of you.