At our gala this past January, Crescent Cove parents Amy and Andrew Gruber shared the story of their beloved son, Theo, who lived 53 days on Earth. He was born with a condition called Epidermolysis Bullosa or EB, a rare genetic disorder that causes skin to blister and tear with the slightest friction. Upon his birth, they were thrust immediately into the role of caregivers, providing hours of bandage changes, bathing, ointment application, and pain medications every day.
Within weeks it became clear to Theo’s healthcare team that he was not going to live much longer, and they came to Crescent Cove for end-of-life care. Here, they felt like Theo’s parents for the first time, shedding their caregiver role to focus on just being Theo’s parents and helping him experience the world. They took Theo around the bases at Dragonfly Field, went down the slide with him and his big sister, and took a pontoon ride on Twin Lake, thanks to our generous neighbors. They watched Theo’s first movie with him, “Finding Nemo,” and even celebrated an impromptu anniversary dinner, complete with candles and a home-cooked meal made by a volunteer. After several days of soaking up all the experiences they could, Theo passed in his mother’s arms, surrounded by love.
Since Theo did not get to travel the world, Amy chose to honor his memory by creating butterfly stones for people to carry with them. Children with EB are often called “butterfly children” because their skin is fragile like a butterfly’s wings. She passed out these stones to friends and family and asked them to take photos of the stones wherever they went in the world, to allow Theo to travel with his loved ones. Within months, Theo’s butterfly stones had been to 4 continents, 8 countries, and 11 states.
To symbolize all the children of Crescent Cove who, like Theo, have passed from their parents’ loving arms, Amy personally crafted dragonfly stones for every guest at our gala. She encouraged them to take these dragonfly stones on their travels, so that Crescent Cove children can travel the world. The very next day, much to our surprise, one of our guests sent us a photo of his dragonfly stone at the beach in the Bahamas! Theo would surely have enjoyed the crashing waves.
Here is where you come in. If you have a dragonfly stone from our gala, please share a photo of where that stone has been. Post the photo on your Facebook or Instagram account and tag Crescent Cove, or use the hashtag #MakingMomentsCount. Or, you can email your photo to us and we will share it with your permission.
Together, we can send these dragonflies all over the world!