|Posted by Haley's mom on January 20, 2010 at 9:37 PM|
We have been so blessed by our community's support and generosity over the years that we have decided to start a research fund in Haley's name. In the last two years since we went public with our family's struggle with Dravet syndrome we have received a great outpouring from so many individuals. Initially it was David Nova and Team Marlin Maniac who put Haley's picture and the IDEA League logo on the side of his Fountain Boat. He has been so generous with a donation of a portion of his winnings on a regular basis. A Lancaster Middle School's student group has contributed the last two years to the IDEA League, and there have been many other individuals that have also shown support through their giving of their time and finances. We were touched recently by a widow asking that donations be made in Haley's honor in lieu of memorials to her late husband. It was after that selfless act that we decided to go forward with the research fund.
After the decision was made, I was approached by the Reverend Bryan McClain and his wife, Stephanie. Their church, the White Stone United Methodist Church, had an annual mid-winter's concert and they donated the proceeds to a charity. This year they asked if it would be OK, if they made the donation to the IDEA League in Haley's honor. We were floored by their generosity. See, we don't even attend their church. What a loving and compassionate community we live in! We are excited about the concert on February 14, 2010 at 3:00 PM.