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!

Wednesday, January 20, 2010

I have to start somewhere...

wow...I have been saying I was going to do this for a long time. Its not that I don't have a lot to say, but taking that step to put fingers to keyboard and tell it like it is has been a hard one. I did a lot of reading over the last few days after learning of another family who is losing their battle with Alpers disorder. It has made me sad and angry. I know that our story isn't over and there is so much that could be learned by me telling what goes on...good and bad. Please bare with me as I learn how to work this Blog and as I gain my voice. My greatest wish is that other families will find this and find answers, inspiration, hope and some humor. I won't pretend for one second that I am an expert on Mito Disorders...ha ha..that would be funny( since I haven't even had a science class since 10th grade)...but what I am expert on and know everything about, is being Averie's mom.

1 comment:

Brook said...

Great start Amber! You have a ton of information and experience to share.