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Anger. Frustration. Advocacy.

Anger & Frustration

 Well the good news I posted about here was that we were thrilled to find out that Luke's food was now going to be fully covered by Alberta Health Services. I placed a large-ish order of new foods for Luke but held myself back from "going crazy" with the order.

 Turns out this was a mistake. The foods that were listed were never meant to be free... meaning there never was a change in coverage. I am not 100% sure on the details as to how this mistake happened, it sounds like an error with the metabolic food distributor. They have not sent an invoice for the cost of the foods I ordered, and honestly I cannot imagine how they could. However foods that are very pricey are ones that Lucas loves, including the animal pasta that we tried for the first time from the free order. 

 I have known of this for a awhile now, as the website was corrected not long after I received our order. I struggled to find a way to post about this in a way that did not involve me venting my anger and hurt. Still I find it hard not to cry when I think of how excited and happy I was when I though it was covered. 

 However, putting my anger and hurt to use offers me the chance to advocate for Luke and other phenylketonurics who live in Alberta. I will be posting more in the upcoming weeks as I get my ducks in a row with how best to advocate for a change in the coverage of foods so stay tuned.

 Thank you everyone for your continued love & support

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