Myotubular Myopathy is a rare genetic disease with clinical manifestations of muscle weakness and pulmonary complications. Although there are variants, as with any condition, most children affected will never crawl or walk and will require breathing assistance due to their severe muscle weakness.
My son, William, has the genetically confirmed diagnosis of x-linked Myotubular Myopathy. Traditionally x-linked Myotubular Myopathy was a fatal condition in infancy with a life expectancy of usually less than two years. Expected life-span appears be improving as medical technology advances. Nonetheless, it is a grim diagnosis for any parent to receive. This is why William’s family and friends have decided to actively raise funds for a cure by founding Where There’s a Will There’s a Cure.
We humbly thank all of our generous supporters. Together we will find a cure!