I don’t know if there is a “good” way to do this. We are living a nightmare. Hendrik and McKinley have a progressive metabolic disease. There is no medication and no cure. It is “comfort care” and that’s it. Hendrik’s recent MRI was far worse than we anticipated. The state’s largest children’s hospital, MUSC, isn’t 100% sure what it is, but their best guess is mitochondrial disease that is causing leukodystrophy. Both children have been referred to CHOP (Children’s Hospital of Philadelphia). So please be patient with us as we navigate this nightmare and struggle with anticipatory grief. Please be patient with them and their difficult behaviors because inside they are fighting for their lives. Please understand we are doing everything we can to hold our family together and also enjoy every moment the best we can.
We appreciate any and all donations to help cover medical bills and more as we navigate care, travel, and hospital stays. If you are not able to donate financially, we absolutely understand – please add them to your prayers for comfort, peace, and understanding.
