Daybue Feedback, page-13

Now here’s a real interesting one. You won’t get much younger and newly diagnosed on Daybue.
How much deterioration will Daybue prevent?
I suppose we won’t know as hopefully Daybue does plenty of preventing.
So we’re are looking at not just reversing but the limiting of neurological decline. Really ground breaking stuff.


8/7/23 Adeline was diagnosed with Rett.
8/30/23 she turned 2.
That day her neuro submitted for Daybue. Our insurance denied the request in 8 min(I think that may be a record lol). 2 denied appeals and peer-to-peer. 9/13 we have an appointment with her developmental pediatrician who says he is meeting with the Acadia rep that day and he is going to talk to them and her neuro. He tells me he has a daughter with DS and he knows how strongly we need to advocate for our kids. We get paperwork for the Acadia patient assistance program last week. We got approved this morning. The pharmacist called me this afternoon and the medication is set to arrive tomorrow by noon. This has been a crazy whirlwind of a month and a half. But I am grateful this process that I expected to take months( at the least) went through so quickly. I don’t expect miracles, but I have to have hope this medicine can help her quality of life going forward. Here’s to having faith in the science of things!