A Guide for Family Caregivers of Loved Ones with Rare Diseases
My name is Cheryl and my husband is David. We have been married for 5 years. I'm 32, my husband is 45 years old. We’re not sure of the diagnosis, but left with choreacanthrocytosis or possible Mitochondrial disease, maybe even just a “David” disease. I married David and took him out of a personal care home to give one-on-one care. I do all the care myself. The Vets hospital offered an adult day care program. Now that I've tapped into this service my life has slowed down so I can breathe, before that I never got a day off to just rest for myself and do the things I enjoy.