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 have since expanded the program to include children 5 and under with a rare, progressive, or severely debilitating life-limiting diagnosis. So far in 2025, we have provided experiences like a specialized comfort car seat to facilitate car trip travel, a specialized light-weight adaptable stroller to enable daily neighborhood walks, and another Disney Cruise is in the planning stages.
For more information and to apply to this program, please visit the Assistance Programs page on NORD®’s website by clicking the link below.
