| Author |
Message |
    
tijen williamson
Rating: N/A
Votes: 0 (Vote!) | | Posted on Sunday, July 07, 2002 - 9:54 pm: | 
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My son is only 2 1/2 years old and has PKU . The problem is that he has
to eat special food that is not financially provided by state or
insurance companies. I can not get him insurance coverage, and can
barely afford his food. ( food is 5 times as much as ours. literally)
Doctors have said several times that this is impossible to live without
this food coverage. I have tried everything. Medicaid and CRS covers
formula. Without lo-protien foods he has to eat ours and there is no
way he can survive with the amount of phe ( the piece of protein his
body can not break down) in it. I do know of a person that has recived
disibility but he is from another state. Please help |
Paul McChesney (Admin)
Rating: N/A
Votes: 0 (Vote!) | | Posted on Saturday, July 20, 2002 - 10:38 am: |
|
Tijen, First, to help you:
You
should apply for SSI. There is a chance that you would get it. There is
an argument that you should get it because you need so much help
feeding him. You should hire an attorney, or get legal aid to help you.
You will not qualify if your income is too high, but since you are
getting Medicaid it probably isn't.
Now, to help me:
I
have a similar case, that is on appeal right now. I need to get
examples of other people who are able to get Medicaid because of this
sort of problem. I need to prove that someone is. That would be you and
your friend. Can I get some sort of official documentation? Did a
lawyer represent you, or your friend? Is there a caseworker that I can
talk to for either of you?
Now to help you:
If
you will email me back something helpful, I will send you a brief I
just wrote on a similar subject. Don't try to just use this yourself!
Get a lawyer or legal aid and show it to that person.
Take care and good luck. |
Anonymous
Rating: N/A
Votes: 0 (Vote!) | | Posted on Wednesday, August 24, 2005 - 5:12 pm: |
|
I
am trying to get 2 small boys that have pku that live with me get ssi.
they are 2 1/2 and 10 months. Does anyone with pku get ssi? |
Paul McChesney (Admin)
Board Administrator
Username: Admin
Post Number: 1555
Registered: 5-2004
Rating: N/A
Votes: 0 (Vote!) | | Posted on Sunday, September 25, 2005 - 5:39 pm: |
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Sometimes; you might talk to a lawyer or legal aid about it. |
Alicia Creel (Arcreel)
New member
Username: Arcreel
Post Number: 1
Registered: 9-2005
Rating: N/A
Votes: 0 (Vote!) | | Posted on Saturday, September 24, 2005 - 10:11 pm: |
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My
son is 2yrs old and has PKU also. I applied for SSI in June of 2005 and
just recently got a reply saying that my son may be disabled but not
seriously enough for disability. It is a rediculous process, but if you
keep nagging and keep pushing appeals it might work.
My name is
Alicia, I am looking for funding to start up a charity strickly for
South Carolina residents or families with a PKU person or child. My
email is arcreel@yahoo.com, please email me with your concerns. |
Vicki Leeds (Unregistered Guest)
Unregistered guest
Rating: N/A
Votes: 0 (Vote!) | | Posted on Wednesday, March 15, 2006 - 8:11 pm: |
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My daughter is 2yrs old and I have wondered if it was possible to get her on disability because the low protein foods are out of sight. SSA told me that it wasn't a disability. I just do not see why not. Worried in Oklahoma mommiealliecat@yahoo.com to reach me.... |
Paul McChesney (Admin)
Board Administrator
Username: Admin
Post Number: 1147
Registered: 5-2004
Rating: N/A
Votes: 0 (Vote!) | | Posted on Sunday, March 19, 2006 - 9:12 pm: |
|
I asume she has a PKU disorder or something similar. Sometimes an award is a possibility in such cases. The whole process of testing and eating is so complex that it takes two people to do what a normal kid can do on his own. |
