by guest columnist Missy Herndon

Three years ago, Missy and Wayne Herndon received the shocking news that their then 6 year old son, Will, had been diagnosed with Batten disease. Like the Bensons, the Herndons responded with a “knowing” that they had to do something to make a difference. Shortly after Will’s diagnosis, the Herndons created the Will Herndon Fund and joined BBDF to collaborate their efforts to fund research to find a treatment or a cure for their children.

The Torch of Hope

“For I know the plans I have for you,” declares the Lord, “Plans to prosper you and not to harm you, plans to give you hope and a future.” Jeremiah 29:11

When Hurricane Katrina hit New Orleans in 2005, the broken city stood with courage, determined to rebuild. A young family, Will and Nicole Murphy, left their home with a baby girl in tow and took a leap of faith, settling in The Woodlands, Texas. Success, happiness, and friendships blossomed in their new Texas community. They were put here for a reason.

Since Will’s diagnosis in the summer of 2009, the Murphys, have been by our side. Their passion to support the research efforts to fight Batten disease is inspiring. Their generous hearts are always giving. Sharing their time, resources, and love for a cause they had never heard of—until that fateful day more than three years ago. As the darkness set in for a diagnosis that was so grim, the Murphys were a light beaming with HOPE to act, fight, and make a change to save Will’s life. They had seen dark days before, and prospered.

Nicole was determined to pass the HOPE torch onto us. Gathering volunteers, she organized the first HOPE Under the Stars event with another AMAZING woman, Carey Bell, raising more than $220,000! These two wonderful women have been the guiding force behind every Will Herndon Fund event over the past three years. Nicole has taken the lead with Will Herndon Fund’s two major fundraisers, HOPE Under the Stars and HOPE on the Green Golf Tournament. Not a day goes by when Nicole doesn’t work for HOPE; it has become her full-time mission.

She has since had another child and started a small business, but her focus has never wavered. The Murphys are a blessing to us as friends and to our research efforts. We thank Nicole for her leadership and her commitment as a volunteer and devoted advocate for Batten disease.

Photo: Carey Bell and Nicole Murphy