How do you continue to 'bring the joy' after receiving a devastating diagnose for your young child? Stephanie McCabe is a medical mom who has been bravely walking this path with her young son, Emmett, after an email confirmed a diagnosis of Sanfilippo syndrome - a rare, inherited, neurodegenerative disorder that primarily affects the brain and spinal cord, leading to progressive cognitive and physical decline.
Stephanie sits heart to heart with me in this episode and shares vulnerably how holding on to joy and the present moment is how they get through the heartache of knowing that Emmett's diagnosis of Type A SanFilippo is terminal.
