Happy Birthday to the most radiant, beautiful spirit that ever was. WE LOVE YOU CHARLIE GIRL! Read on for an update on how she’s doing! xoxo
Sorry for the delay on this post. So many of you have checked in, asking about the update, which totally slays my heart. Thank you for giving a crap you guys. It took a lot longer to get this all out than I was anticipating, but here it is. The time has come. I finally feel ready to talk about what’s been going on with Ava’s health. Brace yourself – this post is raw… and LONG… you’ve been warned. THANK YOU SO MUCH for your support. Helps us feel less alone in what we’re going through. xoxo
We’ve been LONG overdue for a Charlie update, so here you go! Also sharing these adorrrrrable pics from her 2nd birthday party that I hadn’t posted yet! Good job mom.
As always guys, thanks for your continued love and support of our baby girl. There’s a little specific prayer request at the bottom of my post if you’re the praying type and you make it that far. Love you all long time! xoxo
(If you’re new here, Charlotte, or Charlie as we call her, is our 23 month old daughter who has a rare genetic disease called CDG-1p. CDG stands for congenital disorder of glycosylation and currently there is no known treatment or cure. Charlie is one of less than 15 people who has ever been diagnosed with her specific variant of the disease.) So, a little back-story: in late 2016/early 2017, Charlie had a seizure-free stint of about 8 or 9 months. We had begun weaning her off of all her meds to see if she could remain seizure free without medication. Right at the tail-end of the wean, her seizures resurfaced. It was around July of last year, and we were devastated. And since then – so basically the past 6-7 months or so – we have been trying to get her seizures back under control but with no luck. Finally…
We’re headed home from the hospital today! Huzzzzah! Sharing an update on how Charlie is doing post-surgery. Thanks for your prayers everyone! Love you long time!