Will Woleben was born in seemingly perfect health on December 21st of 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 at subsequent visits to the pediatrician he continued to fall further away from the expected growth curve. He was taken to an array of specialists, and all of the 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 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 28th of 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. The disease is extremely 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. All of the hopes and dreams we had for our young son have quickly been erased. Our focus now is only 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.
We are not alone in our fight. Leigh Syndrome is part of a group of disorders known as Mitochondrial Disease. These diseases result from failures of the mitochondria, specialized compartments present in every cell of the body except red blood cells. Mitochondria are responsible for creating more than 90% of the energy needed by the body to sustain life and support growth. When they fail, less and less energy is generated within the cell. Cell injury and, in cases like Will’s, cell death follow. If this process is repeated throughout the body, whole systems begin to fail, and the life of the person in whom this is happening is severely compromised. The disease primarily affects children, but adult onset is becoming more and more common. While exact numbers of children and adults suffering from mitochondrial disease are hard to determine, we now know the disease is approaching the frequency of childhood cancers.
We are determined to continue fighting for our son, and we believe there is hope. There are areas of research that could potentially be extremely beneficial to children like Will, but they need funding. The United Mitochondrial Disease Foundation (UMDF) was formed by families affected by mitochondrial disease. The Foundation provides support to families and funds mitochondrial disease research. Since 1996, the UMDF has funded more than $11 million in research projects aimed at finding better treatments for mitochondrial diseases, with the ultimate goal of a cure. This research has increased the understanding of mitochondrial function, improved diagnosis and moved us closer to treatments and, ultimately, a cure for those who face this devastating disease. Please help Will and those like him through a donation to the Will Woleben Research Fund.
Thank you for your Love and Support.
– The Woleben Family