Addy’s Mito Journey (Addy Weith)

The hardest question I have been asked since my daughter’s diagnosis is “How do you envision your daughter’s death?” Addison (Addy) is our 6 year old miracle. She is battling a rare form of mitochondrial disease, known as MELAS/Leigh Syndrome. As an infant, I knew something was “wrong” with Addy. As she grew, her list of diagnoses grew as did the number of specialists she had seen. An MRI done at 2 years old revealed characteristic brain lesions and genetic testing led us to our diagnosis. Addy is the bravest fighter I know. Addy is a typical 6 year old who loves books, anything that involves getting messy and school. Addy’s most recent MRI in 2018 showed her disease is progressing. We have known it was a possibility but we have prayed it would not be true. Our hope is to keep Addy as happy as we can for as long as we are blessed to have her. We want to show her everything and let her experience all she can while she is still able to walk, talk and communicate. For our family, the most important thing is that we are able to spend as much time with her as we can creating memories to last a lifetime. It is heart wrenching to create a “bucket list” of things you want your child to see and do before she dies.