I have a 2 and a half year old son who requires intensive therapy. We have to keep him covered by 2 health insurances, or we would be spending even more on co-pays, as he goes to 5-10 therapy sessions a week. The cost of the health insurance is about 500 a month. We are trying to get money put into savings, but can't do that until we get this health insurance thing under control.
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That is a rare disorder, so it might be difficult to find a foundation or organization that specializes in that alone. I agree with an earlier answerer that you might see if there is a religious organization that will take you under its wing. The only two sources that I've found that might be able to help are: Needy Meds (link below): It contains links to health care resources. You can search programs by state or by the condition (I searched for PVL but did not find anything or on brain injury either). However, it might be worth searching for programs in your state. Also, Needy Meds has discount drug programs if your son needs medications. National Organization of Rare Disorders (link below): They have a resource page and program listings, although again I didn't see anything specifically about PVL. However, I found them through a government PVL site. The NORD site has a networking feature that allows you to get in touch with other people with PVL or who care for someone with PVL. Good luck. Barnes@MostChoice http://www.mostchoice.com/health-insuran…
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