Malia Moore

September 28th,

We took the 9 am ferry and arrived home at noon. On the way home I began to not feel so good. I was sleeping a lot and when we arrived home mom took my temperature and it was high. 101.7….. I was uncomfortable. Turns out I must have picked up something along the way home. I began to have trouble breathing and my fever even with taking two different types of fever reducers would not go below 101. Mom called Dr. Castro, and she suggested that I take Augmentin and see if we would be able to kick whatever got me without having to go back to San Jose. I began routine nebulizing treatments, 3 times a day respiratory therapy, slept with oxygen and eventually after a week of not feeling so great I slowly began to feel better.

This was the first time that I have been sick that I have not had to rush off to San Jose. I am really proud of myself that I got better so quick. Before if I would get a cold it would take me weeks to get better. This shows that I am stronger! Yeah!!
Love Malia

September 26th, 2013
We enjoyed our last few days in Texas at Uncle George’s house. We had a great time and mom and Maria were able to get some last minute summer shopping done before we left for home! Mom picked up some steals!! I definitely got some new clothes as well! 🙂

Our flight home went so smoothly.. Everything could not have gone any better. We were all so happy that I was doing well! American Airlines always treats us like royalty. We had a great flight home and arrived in San Jose at 730pm…. Our goal is to spend two nights and then head home! We are meeting Curtis, Grego and Nate our house for dinner on Saturday!!Grego and Nate just played at my benefit and are here in Costa Rica staying in the home they bought at last year’s auction. My Mom and Dad have definitely got some cooking to do when we make it home!
Love Malia
Love malia

September 23, 2013
After the benefit we stayed one more day in Austin with friends and family. We are headed to Dallas tomorrow and then we will stay with George and Grace a few days before heading home. We went out with Uncle Andy and Aunt Karen to REI to find me a new stroller for the beach. I cant take my wheelchair on the beach it is too expensive to get it messed up so we opted for the Bob Utility stroller at REI! I like it a lot, it is very easy to maneuver and is light weight! It will be perfect for my afternoon strolls on the beach! 🙂 Time is flying and before you know it I will be back home again!
Love Malia

https://www.youtube.com/watch?v=MoKsVgU_XQU

September 21,2013

My 5th Annual Benefit
Today is my special day! This is my 5th benefit that my parents, friends and family have organized each year in honor of me. We are not only celebrating me, we are raising awareness about Lissencephaly and hopefully opening the eyes of many people about kids with special needs. By having my benefit we are able to donate money to research and we are able to continue to pay for my therapy and medical care. To me, my therapy is what has kept me going strong. Being able to work out daily is not something that all kids with Lissencephaly receive. Most of the time it is the government deciding or the insurance company on how many therapy sessions are allowed. Since I live so far away from a clinic that provides physical therapy my parents decided it was important for me to have my own physical therapist and that I receive daily therapy. Maria Jose has worked out great and has helped me accomplish many goals. So I want to thank all of you who come out and support me and donate to me and my cause because without you I would not have therapy and this my friends is what makes me strong and keeps me going!

The day was absolutely beautiful. It was sunny and the temperature had dropped to a nice cool fall day in Texas. Miss Jellybean, the face painter, was back to paint faces on me and all my friends for the day. She does a great job and is really sweet. The band Son y No Son started off the day with a nice Latin flair and slowly but surely people began to trickle in to the party and before you know it we had a nice big crowd.
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Kathy Peterson, Kate Linzey, Megan Cain, Kimberley Hamilton, and Paula Adams were all there ready to hug on me. It was such an honor to have these great moms’s come to my benefit. I got some snuggle time in with all of them. This was the first year for me to meet Kate, Kathy and Megan. Megan sadly lost her Parker to Lissencephaly last year. Parker was only two years old. I am sad I did not ever get to meet Parker but I know she was there that day in spirit watching down over all of us. It really meant a lot to me and my parents to have them all there. A little later into the benefit my mom and dad got up to say a few words about me and Krishnan my buddy from Canada took stage with my mom and his guitar to play my song for me. Mom had been practicing a lot she sang it daily but then has always sang it to me even when I was just a little baby… It is my theme song, because I have to believe that “everything is gonna be alright” ! Mom and Krish did a great job. I could tell mom was nervous but she did really good up there and dad too! 

The benefit was a big success! We raised just over $20,000! We are proud to donate each year to Dr. Dobyn’s the geneticist researcher at Seattle’s Children Hospital. He discovered the missing gene of Miller Dieker. I am hoping one day they just might find a cure. That would be amazing.
I would like to say again from the bottom of my little heart thank you for the continued love, support, and friendship you show me each year. I love each and every one of you mucho mucho! Hope to see you again next year and for those who could not make it maybe you will next year!
Love always,
Malia