Kelli,

I'm sorry you're in such a very difficult situation right now. I hope
that you're getting some support from friends and family. You may
need to ask them to come help you out at this emotionally difficult
time.

Some people with a diagnosis of WKS have managed to get better, as
evidenced by other postings on this list. Although you may need to
proceed as if he has permanent disability, particularly when applying
for financial assistance, there is still some hope of recovery.

Can you tell us more about your husband's history? Where do you live
(city and state)?

Are you getting assistance from any social workers? One concern I
would have for you is how you would be able to afford long term care
for him, which is usually not covered by health insurance programs.
Have you been getting information about whether he would be eligible
for SSDI (Social Security Disability Insurance) or SSI (Supplemental
Security Insurance)? These are federal programs in the U.S. that
provide income and health insurance for people with permanent
disabilities. If he's eligible, the sooner you apply, the earlier he
would start receiving benefits and coverage. If you haven't been
getting assistance with this, you might ask the social workers at the
hospital how to proceed.


Dana
Rockville, MD


On 3/30/07, kelliflynt <kelliflynt@...> wrote:
> My husband was just diagnoses with this after 3 weeks in the
> hospital. We have been told that this is permanent and we need to
> look for long term care. He is only 31 years old and we have a 3 year
> old son. This is very difficult to try and grasp, it's very scary. I
> came across your site while i was trying to get info on the syndrom.
> Reading the notes from some members helped. Any input from anyone at
> this point would help so much! The doctors can't seem to say much at
> all.