Help for Amino Acid Disorders

This petition is to get help with low protein foods and formulas for persons with an Amino Acid Disorder; Phenylketonuria(PKU), Organic Acidemas, Maple yrup Urine Disease, etc. These disorders are genetic and are picked up at birth through the state\'s NewBorn Screening Test, these tests were started in the 1960\'s. There are hundreds of adults and children with one of these disorders. A person with any one of these disorders must sustain a very strict low protein diet for LIFE. If the Diet is not maintained the outcome will result in mental retardation as well as behavior problems, learning disabilities, and neurological problems. The extreme cost of these low protein products is a problem. It is $10.00 (ten) for a loaf of low protein bread, as well as for low protein pasta, and low protein cheeses. Not all states in the US have mandated insurance companies to pay for these products, for most there is no help. SOMETHING MUST BE DONE NOW! This petition will be sent to as may representatives as it will take to ensure all with these disorders have help to live healthy lives.


Kim Marsico Mom to Robert 3 PKU


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    Terri Krasny, United States

    4 years ago State: New Jersey
    Country: United States
    Comments: I am 47 yrs old and have classical PKU...paying for adn acquiring the medical food requried is a constant battle..because of the cost..If I am not right on where I need to eb w/ the diet..I defintely feel the effects...alot
  • username

    Ciara McGilvray, United Kingdom

    4 years ago State: -
    Country: United Kingdom
    Comments: -
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    Travis Cooper, Australia

    8 years ago Country: AU
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