Thank you all for your prayers! We are praying that the seizures stop and she has a chance to get the on trial drug. Today has been full of ups and downs...still trying to stop seizures. Upping versed as high as she'll tolerate and starting a magnesium drip in the morning. A couple other med options, but very few. Talk is that if they are able to get the medicine she'll be moved to Seattle. All I want is a chance for her.
Following the day to day happenings of a little girl living with a mitochondrial disorder.
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!
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!
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