Will's Story

When we received Will’s diagnoses of SURF1 Leigh Syndrome back in 2014, we were given no hope. The doctors informed us that the disease is rare, progressive, and untreatable. We were told that as the degeneration in his brain progressed, he would slowly lose his motor skills and would most likely not live past the age of 10. Will is now 6 and we’ve watched helplessly as he’s lost his ability to walk, talk, and eat. Through all of this we have not given up the fight for our son, and recently we’ve been given reason to believe what we never thought possible - that Will’s story can go from one of despair and hopelessness to miraculous comeback. After years of searching for answers, we believe we’ve found a potential game changing opportunity for our son. We are partnering with Dr’s Steven Gray, Berge Minassian, and the team at UT Southwestern to develop a custom gene therapy targeting the SURF1 gene. If pre-clinical work proves successful, this will be the first treatment of it’s kind for Leigh Syndrome and has the potential to help thousands of children who suffer from this terrible disease. Will has gone through a lot in his short life, but through it all he’s remained a sweet, loving, and very smart little boy. He continues to be full of life and enduringly positive, and despite the decline in his physical ability he remains incredibly precocious. His days are still filled with laughter, spending time with friends and family, and an insatiable thirst for all things hockey. We feel extremely blessed for the opportunity to work with other SURF1 families and the researchers at UT Southwestern in attempt to develop a gene therapy treatment for these children. With your help, this research will be a critical step in giving Will and those like him the ability to overcome their genetic diseases. Many challenges lie ahead for this project to be successful, however we believe ultimately this research will lead to a cure and provide these children the opportunity to live full lives and chase their dreams. Thank you for your love and support! The Woleben Family

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