PKU.com Community Discussion Forum Parent support Anyone need Phenyl-Free 1?

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  • #8627
    Avatar of Emily
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    Member

    My daughter Marley turned a year old in November and we transitioned from Phenyl-Free 1 to Phenyl-Free 2.  She is completely off the Phenyl-Free 1 now but we still have 8 unopened cans of it.  I meant to bring it to Riley hospital with me her last appointment but forgot it at home.  I know how hard it can be to get insurance coverage for the formula so if anyone out there without insurance needs some Phenyl-Free 1, I would be willing to send you what we have left.  I would hate for it to go to waste, but we don't have another appointment until March and I don't know if we would make it back to Riley before then or not. 

    Emily

    #8628

    Hello,

    my name is Andrew and i'm on the phenylfree 2. I've been fighting trying to get covered for my formula for over 6 months now. I have little to no cans of my formula left and i'm in desperate need of it. I can feel a physical difference in my  overall well being and would be happy to take the formula off your hands if it's not too much to ask. If you haven't already spoken to someone else I would be very grateful for the formula. If you'd like you could message me. Also, i'm new to this site…and i'm not sure how my being Canadian applys to this haha. This would be so very much appreciated. I look forward to hearing back from you. Thanks. 

    A.R. 

    #8633
    Avatar of Emily
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    Member

    Hi Andrew.  I'm sorry you are having such a hard time getting your formula.  We have struggled with insurance coverage, but luckily have received approval for this year.  It is such a relief, and I know the stress of not having coverage (although our clinic has been WONDERFUL!!!).   I wish no one had to go through that.  The formula I have extra of is actually the Phenyl-Free 1 (for babies under a year old), not the Phenyl-Free 2 that you use.  I'm sorry.  Plus, I should have specified that I would only feel comfortable shipping it in the United States.  I'm not sure how that would look trying to ship medically prescribed formula across the border…maybe not good.  (???)  

    I certainly hope that you get coverage for your formula.  I was under the impression that in Canada you didn't have to worry about coverage.  I know there is talk of passing a law here to require insurance coverage but nothing is done yet to my knowledge.  I'm not sure how the laws work up in Canada, but I hope there is some way you can get your formula.  I wish I could help.

    Emily

    #8669
    Avatar of Emily
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    Member

    I think I'm going to send this Phenyl Free 1 back to our clinic sometime this week. 

Viewing 4 posts - 1 through 4 (of 4 total)
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