Charles (age 10)
Life throws us curveballs. And in the fall of 2012, my wife and I got thrown a big one. At only 18 months old, Little Charles Wagner was diagnosed with Lennox-Gastaut Syndrome (LGS), a rare and severe epilepsy disorder characterized by recurrent seizures and impaired development that begin early in life.
After 9 years of living with this disease, Little Charles has gone through seizures, difficulty with mobility, autism, brain surgery, and has become non-verbal. He needs round-the-clock care and help with daily activities, including eating and taking medications. Yet, he has a great sense of humor and loves nothing more than spending time with his mom, Liz, younger brother, Michael, and father, Charles.
Charles and Liz stop at nothing to care for their son. For example, for the first three years of his diagnosis, Charles slept next to Little Charles to stop him from wandering at night and possibly injuring himself. After years of taking care of Little Charles, Charles was facing health issues of his own, like high blood pressure and problems with weight. He made a commitment to improving his health, not just for himself, but so he could continue to care for Little Charles.
Through Charles’ fitness journey, he has been able to spend more quality time with Little Charles, who enjoys accompanying his father and brother as they run and bike. Charles worked his way from a 5K to a half marathon, waking up each day at 5 am to run on the treadmill and train. Since the start of his journey in the Fall of 2019, he has lost more than 90 pounds and has gotten off of three of his four daily blood pressure medications. Charles is now in a better position to continue to help Little Charles, who is facing the possibility of a second brain surgery. But, he needs your help.
Charles will be competing in an Ironman competition to raise funds and awareness for LGS to help people like Little Charles. The money raised by Charles for this Ironman will go to LGS Foundation. The LGS Foundation is working to advance research for LGS and find a cure, as well as to support people who are affected by this disease and their families, in living their best lives.
Our modern understanding of Lennox-Gastaut Syndrome is built upon years of effort by scientists, physicians, and other medical professionals investigating LGS. Tireless efforts of these professionals have contributed to improving treatments, quality of life, and understanding of Lennox-Gastaut Syndrome.
However, there is still a tremendous amount of work to be done. Epilepsy is extremely underfunded and only a handful of clinical trials have ever been conducted for LGS. Due to its heterogeneity (and a lack of a single cause), researchers often find LGS a difficult syndrome to study. Therefore, it is imperative that research is advanced by efforts through the LGS Foundation, by researchers who are invested in the disorder, and by families, who are passionate to make a difference in their children’s lives.
When you support medical research, you are helping researchers build the future of medicine and unlock clues behind LGS. With the partnership of individual and corporate donors, we are able to advance medical knowledge and improve patient care.
Charles is committed to his son and to raising funds for LGS research to support him and others like him. Will you be a part of helping Our Little Ironman continue his fight against LGS?