What are the expected costs associated with caring for a child with Canavans disease?
Our insurance is really pretty good. Most of the doctor care is paid for to at least 80%. This leaves a significant amount for the family to pay out of our own pocket. The actual cost so far has been over $3,000 and will likely rise to at least $5,000+ in the next couple of months. Travel is also going to be very expensive with at least 10 trips to Camden being required over the next 12-18 months. This will be at least 5 to 8 thousand dollars more. Finally, medical equipment is very expensive (I had no idea). Our insurance will cover a pediatric wheelchair for Vincent, but bath equipment, car seats, standers, therapy devicesetc are not covered and we could easily spend another $10,000 in these expenses alone.
