Will Woleben was born seemingly in perfect health on December 21, 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.
In late April 2014, Will collapsed while playing and although fully awake and aware, he could not move his limbs. He was immediately taken to the ER where an MRI scan was completed.
On April 28th, Will's parents 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 neurologist, his parents started to understand the hopelessness of the situation.
Leigh syndrome is extremely rare, progressive, and currently there is no treatment or cure. They were told their 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, their lives have been turned upside down. All of the hopes and dreams they had for their young son have quickly been erased. Their 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," said Kacey, Will's Mom. "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."
To learn more about Will, visit https://www.curesurf1.org/.