A Guide for Family Caregivers of Loved Ones with Rare Diseases
Thankful for Help from Our Church
My name is Maddie. I am 54 and the main caregiver of our 27-year-old son, Ken. He has a combination of two rare forms of a neuromuscular disease. He has had problems all of his life. Within the last five years, he has gradually needed more assistance and now he requires full-time care. His care is 24/7 for he has to be turned frequently during the night. If not for the assistance from a member at our church, who comes over for a couple of hours a week, I would not be able to run errands. The constant stress of caregiving is resulting in physical and emotional concerns for us. The isolation is a big problem.