After Eva passed in July 2017, we were inspired by the beautiful butterflies that would come to visit us that summer. The butterfly was a reminder to us that Eva is at peace and free of this disease. In our grief, we wanted to find a way to give back directly to Walker-Warburg Syndrome (WWS) families with a positive experience during a difficult time. We remembered how much fun we had making a “bucket list” with Eva, sharing memories together and we wanted to pay that forward. With this in mind, we created Eva’s Butterfly Wishes®.
Since October of 2020, we have partnered with the National Organization for Rare Disorders (NORD®), to offer a patient assistance program providing fun experiences to other WWS families. We are so excited to announce that we have expanded the program to include children under the age of five with a life-limiting rare diagnosis. For more information and to apply to this program, please visit the Assistance Programs page on NORD®’s website by clicking the link below.
