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!

Tuesday, January 26, 2010


One minute Averie is happy go lucky little five year old, then BAHM! A tornado hits!
Just Sunday she woke up happy and cheerful and was being a sweetheart! Then, I pour milk on her cereal ( which I do almost every day ) and she breaks down...crying and sobbing..telling me to take the milk off her cereal. I try and be rational, explain it's not possible and she goes crazy! Screaming and throwing a tantrum. I normally only see her do this when something is out of routine...like heaven forbid I give her meds out of order. I HATE when she acts like that, but I have learned the most effective method of calming her down. WALK AWAY. yup...just walk away...I can argue till I am blue in the face and she just gets more and more agitated, but if I simply tell her she can cry and I walk away for a few minutes, she will stop. Once she calms down she is back to her normal self. What I want to know is this: Are the meds making her this way? Or some unseen activity in her head? Or is this just her? Her personality? After she finally calms down I see a shakiness that wasn't there before..she is more unsteady and her hand is moving constantly. On these days she tends to always take a longer nap. I can only imagine how much extra energy it takes to get so worked up.
Thankfully that particular day she did calm down,..took a good nap and we finished the day off with Mommy/Daughter Date to Alvin and the Chipmunks the Squeakuel! She sat and ate her Happy Meal ( she totally suggested sneaking one in ) and smiled and giggled her way through the movie. Then during credits she got up and danced at the front of the theater, one of her most favorite things to do! Her dance style is somewhere between Mary Katherine Gallagher( SNL ) and Elaine (Seinfeld)...its completely ridiculous!

I love my little girl...no matter what extreme mood she is in!

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.