Hi Red! This is Shanna. I guess I am the right person to talk to about this.
Ever since my son was diagnosed with DMD, mine and my husband's lives have completely changed.
Hi! This is Red. Dr. Loo gave me your number and told me you were the perfect person to talk to concerning my curiosity about the effects of DMD on family of affected individual.
“Simple” daily tasks need to be done with our assistance, such as dressing, showering, eating, brushing teeth, etc. Many doctors are needed to maintain great care for our son,
...so coordination and financing of that is very difficult & stressful
What do you mean by that?
Attending therapy (physical, and verbal) appointments, also stressful to co ordinate and finance To add, attending to our other children; feeding, bathing, dropping to school, activities, etc., and more,
Worst of all, our whole family suffers knowing that our loved one is slowly dying, and we fear the thought of losing him in his late teens/early twenties. it’s just gut-wrenching.
is a huge burden on top of caring for one with DMD and that needs almost all our attention 24/7. This is very draining and we fear our other children feel neglected.