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, August 11, 2011


I finally got to see my girl this morning.... Got here an hour or so ago. She looked awful when we got here...having muscle seizures like crazy! I expected to see her on the vent, but not to see her still having seizures. Her EEG was practically solid black with activity :( Just before i got here they had just bolused the magnesium and about 30 mins ago the seizure stopped outwardly and eeg looks much better. They use magn. a lot in pre-eclampsia patients. She also is on antibodics due to testing positive for strep. All vitals are good. Blood pressure is a little low, but they think that's from high versed levels- it contains preservatives that can become bad from prolonged use. We have her dropping down on versed now. Its a crazy mess of machines in here...not even room for a recliner today. I'll continue to update as things change. This is just such a rollercoaster...all the more reason to push for more awareness of Mitochondrial disorders! We needn't have these children suffer any longer.

1 comment:

*JSJJ Long* said...

We love you Averie and are praying for you constantly!!! Hang in there sweet girl.