Averie Elizabeth

Averie Elizabeth

Who is Averie?

Averie passed away Sunday November 13th at 3:33am due to complications of her mitochondrial disorder. My beautiful princess is finally healed and in heaven with her brother :)

Averie is a crazy, beautiful, smart energetic 7 year old who keeps everyone on their toes! Averie has been fighting Alpers since her first seizure in 2004 at the age of 4. Her older brother passed away from Alpers when she was just 1. Just recently she became a big sister for the first time! Averie is strong willed and stubborn...I believe that's what keeps her going on the days her disorder creates obstacles for her. She is my special little girl who I love one cow, two moons and three fences big!

Thursday, July 28, 2011


I should've never said it was going to be a long day....Averie started having a weird muscle spasm/seizure in her right shoulder and chest. She was completely coherent the whole time, but we ended up at the ER because I have NEVER seen something like this and no idea what to do. She was wide awake so I didn't think it required a diastat, but it was concerning enough I wanted her checked out. They couldn't tell if it was seizure activity or something called muscle fasciculations. All her vitals were normal and she wasnt acting like it really bothered her(she was cracking jokes and actually being the most normal I've seen her in weeks!) but she was clearly uncomfortable enough that she couldn't sleep and it kept starting and stopping so we ended up giving her oral valium and she finally fell asleep around 3am...it stopped not long after that. Now this morning she's sound asleep and the thing is stopping and starting randomly. What to do...hoping it stops and we can avoid a trip back to the hospital. ....fasciculations....really?  At least its an interesting word to say....

1 comment:

Heidi said...

((((hugs))) poor kiddo, I hope this passes and she (and you!) can get more rest soon. How often do you come up to Seattle Childrens? One of these days we might meet :) BIG hugs and prayers for Averie.
Heidi & Jack.