Hi everyone!
Well mom and dad have me on the road again! We left for San Jose on Sunday to catch the ferry. When we got there they told us it was full! Boo!!!! We had to turn around and go home! I did not care though I got to see my dogs again! So at 2:30 am the next morning my mom and dad took me out of bed in my pajamas and we headed for the ferry again this time trying to catch the 5am ferry! We got there an hour early to make sure we were getting on the ferry! My first PT appointment was at 11:15am and we cruised into town around 9:30am! I am lucky my good friend Pipa is letting us stay at her house this week in Escazu! She is the best! More later!!! Love Malia
Journey to San Jose
June 9th, 2009Great News!
May 16th, 2009My mom and dad found out from the Children’s Hospital in San Jose that their chromosomes are normal without any deletions! This is great news for our family as my mom and dad have a less than one percent chance of this happening again! So yeah for me, I just may have a brother or sister that I can play with in the future! This news simply concludes the fact that I am really really special and how lucky my parents are to have me!!
The Chosen One
May 3rd, 2009I had a dream the other night
It came to me so clear
I stood before the throne of God
Afraid to come near
God said to me “I hear your prayers”
There are answers you can’t find
I’ve asked you here to talk to me
And help to ease your mind
I said, “Well, yes God, I am upset
About my special one
This punishment is awfully harsh
What have we ever done?”
God looked at me and shook his head
and said you’ve got it wrong
I sent this special child to you
because you are so strong!
I searched and searched to find someone
With love so true and rare
A parent so unselfish
That could give this special care
I try and save my special gifts
Like those you’re speaking of
For special kinds of parents
I call the “Chosen Ones”
Of all the ones to choose from
Think this I have done
A parent who deserves the best
An honor you have won.
Pipa and me
April 10th, 2009
My new friend Ariana
April 10th, 2009
mi amigita ariana!
my friends Diego and Rosibel
April 10th, 2009
This shot is at a great restaurant in Escazu that our friends took us out to lunch! It was a great day!
Welcome to my BLOG
March 14th, 2009
Malia Moore
Hola,
My name is Malia and this is the beginning of my story.
I was born in San Jose, Costa Rica on June 17, 2008. I was born with an extremely rare brain formation disorder called lissencephaly. Lissencephaly means smooth brain. It is a condition in which the outer layer of the brain, the cerebral cortex, is abnormally thick and lacks the normal convolutions. During the third and fourth months of my mom’s pregnancy, my brain cells should have multiplied and moved to the surface of the brain to form my cortex. Due to the failure of this nerve cell migration, I ended up with lissencephaly.
The type of lissencephaly I have is called Miller Dieker Syndrome. This means that I have a partial deletion of Chromosome 17. Lissencephaly has been a challenge for me but I refuse to accept the prognosis of this disease and prefer to take it one day at a time. Although I will be physically and mentally challenged, I am determined to defy the odds.
I want my story to bring awareness about lissencephaly and hope to all children who struggle with disabilities and diseases. I hope that making people aware of my story will help others open their eyes–and their hearts–to children with disabilities.
Visit my website, maliamoore.org