When it comes to taking care of those we love that are either chronically ill or terminally ill, it can feel as if the weight of the world is on your shoulders. As the mother of a child with a rare, progressive, and terminal medical condition, I can completely relate. It seems like accurate, practical, and honest information is hard to come by. This website is an attempt to focus on the issues we face, coping, mental health, resources, and how we live with our daughter’s diagnosis of Ataxia-Telangiectasia daily.

How to contact me!
How to contact me!