On Sunday morning, September 19, 2018 we photographed Golf For a Cure hosted by The Cure Surf1 Foundation at Topgolf in Colony, Texas. We met Doug and Kasey Woleben, co-founders of Cure Surf1, and their son Will. He is six years old and lives in McKinney, Texas, with his parents and younger sister Lauren. Will started to exhibit symptoms in 2014 when he was only two years of age. Tests yielded no results so doctors and specialists told the family their son was fine. One day he fell and vocalized that he couldn’t get up so he was rushed to the emergency room. After tests were performed in both Plano and Dallas, the Wolebens were finally given an answer from the staff at Children’s Medical Center: Will has Leigh Syndrome.
Look at that sweet face! Will wants to be a hockey player. :)
Leigh Syndrome usually appears during early childhood. It causes deterioration within the nervous system and affects both brain and body functions. Because the complications are so severe, this rare disease can be fatal within a handful of years. Unfortunately the number of defect and symptom variables makes the search for a cure more difficult. More than ever families want answers to meet the needs of a disease that continues to be misdiagnosed and untreated.
It didn’t take long for Will’s condition to worsen post-diagnosis, giving his family very little time to adjust. Eventually he lost his ability to speak and required a feeding tube for eating and a wheelchair for transportation. Despite a bleak prognosis, his parents remained optimistic. In 2017 they received some hopeful news: The UT Southwestern Medical Center was opening a gene therapy center. The staff would include Dr. Steven Gray who has significant experience working with children affected by rare neurological disorders. The Wolebens reached out and were rewarded with a meeting. Dr. Gray was honest about spinal injections being an experiment, not a cure, but Will's parents feel that it is more than what's been available in previous years and worth a try.
Because rare diseases such as Surf1 Leigh Syndrome affect so few people, there’s been very little urgency to fund research. The work at UT Southwestern is a step in the right direction, but funding remains an obstacle. Doug and Kasey have taken on the task of raising awareness and money, joining forces with two other families to form The Cure Surf1 Foundation. Their hope is that Dr. Gray’s form of gene therapy will produce successful results in the testing stage and become a clinical trial. Their mission is raising enough financial support to make treatment available to all families.
Golf For a Cure 2018 was a success, raising $28,249 for Will and his fellow fighters. It was an honor to be involved and contribute to something bigger than just a one-day event. Now that you know what Leigh Syndrome is and why The Cure Surf1 Foundation does what they do, please visit the website to find out how you can show your support.
The foundation still needs your support, please show your support and donate!