Aiden is one of the happiest kids you’ll ever meet. He’s easy going and has the greatest smile. He loves to connect and interact with others. And, he’s living with Leigh’s Syndrome, a debilitating mitochondrial disease that results in his cells not being able to generate enough energy for him to function as he’d like to. This means frequent naps, delays in movement and speech, sensitivity to heat, and other challenges.
We had a frank interview with Aiden’s Mom, Bonnie, to discuss how the world is not designed for children with special needs, choosing day care over school, accessibility and expensive in-home care, and the love of siblings. Bonnie says, “Understanding your child’s diagnosis and needs is critical. As parents of children with mito, we need to learn a new vocabulary and integrate ourselves as part of the healthcare team.”
Despite being told he was unlikely to see his fifth birthday, Aiden is a sensational six year old who is breaking through barriers and defying the odds. Although endless questions remain unanswered, Bonnie refuses to be discouraged. She knows every child is unique and this applies to Aiden. Still unsure of what the long-term future will look like, this family is loving life and the time they spend together. |
