ahkeela
Earning My Ears
- Joined
- Apr 6, 2009
- Messages
- 38
Azaria's Make A Wish Trip-Take II
(I had started a pre-trip report before, Azaria's trip was originally scheduled for May 2009 but was rescheduled to October. I tried to update the old trip report but wasn't able to update it for some reason. So here is take two.)
Azaria is 6 years old, and her wish is to be a princess at DisneyWorld! She was granted a wish from the Make A Wish organization last summer but scheduling the trip has been a bit difficult. The trip is now scheduled for October 20-28th. Azaria's birthday is October 26th, so we are very confident that we will make the trip this time!
A little about Azaria and our family: Azaria was born with Aicardi Syndrome, an extremely rare neurological disorder that is only found in females, and includes absence of the center part of her brain, retinal lesions causing blindness, daily seizures, and developmental delays (among other things). Azaria has seizures every day, at the most she had over 100 seizures a day when she was 9 months old. Now, she only has 3 or 4 mild seizures a day, and about once a month, she has a very big seizure that requires emergency medical intervention. When she was born, the doctors said "take her home and enjoy her while you can", life expectancy is 5-7 years. We were also told that she would never walk, or talk, or sit unassisted.
Given all this, Azaria has done tremendously well and has been such a joy in our lives. She is quite aware of her surroundings, communicates her likes and dislikes, she is legally blind but you would never know it and she is so brave through her daily seizures and struggles. One thing that should be on the "list" of Aicardi Syndrome is just how angelic these girls are. Azaria is so sweet and is always so happy and content. She even smiles right after some of her hardest seizures, as if to say "don't worry Mom and Dad, everything is ok."
The rest of the family includes, my husband TJ, our oldest son Christopher (21) who lives near San Francisco, and our youngest son Aidan (5), and me.
We are all really looking forward to this Make A Wish trip for Azaria and want to make the most of it for her, she so deserves it!
Thanks for reading, I look forward to the trip planning part of this and am open to any advice and suggestions!
Debi
(I had started a pre-trip report before, Azaria's trip was originally scheduled for May 2009 but was rescheduled to October. I tried to update the old trip report but wasn't able to update it for some reason. So here is take two.)
Azaria is 6 years old, and her wish is to be a princess at DisneyWorld! She was granted a wish from the Make A Wish organization last summer but scheduling the trip has been a bit difficult. The trip is now scheduled for October 20-28th. Azaria's birthday is October 26th, so we are very confident that we will make the trip this time!
A little about Azaria and our family: Azaria was born with Aicardi Syndrome, an extremely rare neurological disorder that is only found in females, and includes absence of the center part of her brain, retinal lesions causing blindness, daily seizures, and developmental delays (among other things). Azaria has seizures every day, at the most she had over 100 seizures a day when she was 9 months old. Now, she only has 3 or 4 mild seizures a day, and about once a month, she has a very big seizure that requires emergency medical intervention. When she was born, the doctors said "take her home and enjoy her while you can", life expectancy is 5-7 years. We were also told that she would never walk, or talk, or sit unassisted.
Given all this, Azaria has done tremendously well and has been such a joy in our lives. She is quite aware of her surroundings, communicates her likes and dislikes, she is legally blind but you would never know it and she is so brave through her daily seizures and struggles. One thing that should be on the "list" of Aicardi Syndrome is just how angelic these girls are. Azaria is so sweet and is always so happy and content. She even smiles right after some of her hardest seizures, as if to say "don't worry Mom and Dad, everything is ok."
The rest of the family includes, my husband TJ, our oldest son Christopher (21) who lives near San Francisco, and our youngest son Aidan (5), and me.
We are all really looking forward to this Make A Wish trip for Azaria and want to make the most of it for her, she so deserves it!
Thanks for reading, I look forward to the trip planning part of this and am open to any advice and suggestions!
