Will Woleben was born in seemingly perfect health in December 2011. The first year of Will’s life progressed normally as he hit all of the standard milestones on time and grew into a sweet, loving, and very smart little boy. Around the age of one, Will’s growth started to level off, and subsequent visits to the pediatrician showed that he continued to fall further away from the expected growth curve. He was taken to an array of specialists, and all of the standard test results said the same thing…Will was in good health, just a slow grower.
Around the age of two and a half, Will collapsed while playing and although he was fully awake and aware, his body had gone completely limp. He was immediately taken to the ER where an MRI scan was completed. On April 28, 2014, we were given the devastating news. The MRI had revealed patches of dying cells within his brain and brain stem, which are characteristic signs of a severe mitochondrial disease called Leigh Syndrome. During the initial meetings with the neurologists we started to understand the hopelessness of our situation. Due to a genetic defect, his mitochondria are not able to produce enough energy for his cells to function normally. As time passes, this lack of energy leads to cell death. The disease is rare, progressive, and currently there is no treatment or cure. We were told our son will not likely live past the age of 10 years old, though since the disease is so unpredictable there is no way to know how quickly it will progress.
Since the diagnosis, our lives have been turned upside down. We've watched helplessly as the disease first robbed our son of his ability to swallow (resulting in a feeding tube), then his ability to walk, and most recently his ability to talk. If this disease is left unchecked, it will begin to impact critical organs such as the heart and lungs. The most common cause of death for patients with Leigh Syndrome is respiratory failure.
All of the hopes and dreams we once had for our young son have quickly been erased. Our focus now is on giving him the best life possible and doing whatever it takes to slow down the progression of this terrible disease. We are so blessed to have Will in our lives. Through all the struggles he’s had to endure, he remains full of laughter and joy. He continues to live each day with an unwavering positive attitude.
Mitochondrial-Genetic Disease Clinic at CHOP
We are determined to continue fighting for our son, and we believe there is hope. The Mitochondrial-Genetic Disease Clinic at Children's Hospital of Philadelphia is one of the top research centers in the nation for mitochondrial related diseases such as Leigh Syndrome. Historically, a major roadblock in finding a treatment or cure for mitochondrial diseases such as Will’s is that mitochondrial malfunction can be caused by a wide number of genetic defects. Although Leigh Syndrome is quite rare, Will’s particular genetic mutation is the most common cause. Through this research project, we will be teaming with Dr. Marni Falk and the team at CHOP to investigate therapies specific to Will’s genetic defect. We feel strongly that this research project has the potential to have a dramatic positive impact on not only Will, but also the thousands like him that suffer from this terrible disease.
Thank you for your interest in the Will Woleben Research Fund. 100% of all contributions are tax deductible and will go directly towards this project.