Malia Moore

It was a beautiful morning the sun was shining on me, the birds were out singing and the temperature could not have been any better! My party is finally here! After months of planning and organizing we are finally going to get to celebrate me and raise awareness about Lissencephaly. The day started off great. My mom went to help all the people who were setting up for my party at Opal Divine’s! My dad stayed with me and we hung out for the day together! By the time my mom came home both me and my dad were sleeping. She did not wake us up and started to get ready for the party! My dad woke up but I just did not want to get up! My mom hates to wake me while I am sleeping so she kept letting me sleep but it was getting late as my party started at 4:30 pm! Finally my mom had to wake me at 4 and we had to get moving!

On the way to Opal Divine’s my Uncle Jesse called my mom and said that we needed to hurry up as KEYE news was there wanting to take some footage of my pretty face! Wow! We did not even know they were coming! My mom wrote a press release and had an interview with KOOP radio as well this week and the news station decided to pop in at the last minute and wanted to spread the word about my story! What great coverage!!!!

The party started off nice and slow. Many people were watching the UT game but eventually everyone  began to filter into the party!  My Uncle Jesse and Janet got the party rolling as they were the MC’s for the entire event! They did a most outstanding job and kept talking about me and awareness for Lissencephaly.   The music was fantastic! I could have not asked for a better line up of music and I thank all my musical friends for playing for me! Most of all seeing all my friends and family together in one place to celebrate me, made me feel so good inside! I was not coughing either and was on the down hill slide of this cold! There were many kids activities and Rachel the face painter did a great job painting all the kids face! Even some big kids had their face painted!

Suzanne and Sharron really came through with the silent auction and had the auction room looking incredible!  Jenn , Scott , Megan and Maddie from Houston showed up to help get everything ready as well. Thanks to my Uncle Jesse and Donald  and to all my friends for helping with the benefit! You are so appreciated and loved! Thanks to Uncle George for keeping it together and helping with checking everyone out at the end! Thanks to Holly and Debbie who were not there but were there in spirit! You better be there next year! 😉 An extra special thanks to Suzanne for putting together a most beautiful and very well run auction! We hope you come back again next year!! 🙂

We could not have done this party without the help of all of you so THANK YOU!!! And a huge thanks to Michael , Susan and Carole for letting us have my party at Opal Divine’s! We hope to do it again there next year!

Love Malia

Today I went swimming with Nancy Higgs! She invented Waterway Babies! She is a very nice lady! Me and my mom and dad went to the YMCA to meet with Nancy and we got to swim together! I still have this cough so we did not get to swim for too long together but the time we did was alot of fun! Thanks for coming to meet me Nancy and for coming up with my neck float ! Swimming is my favorite thing to do! Nancy is coming to my party tomorrow too! Tomorrow is the big day! 

Love Malia 🙂

Today at my PT workout, Carole decided I needed to take steps! You all know that I have been practicing standing for awhile with the help of shin guards and ace bandages! Anyway, Carole put me in a diving suit (kinda) it is made out of Lycra and it helps provide feedback to my brain through deep pressure and tactile stimulation. It is called a SPIO suit. Carole also put me in a headmaster collar. The collar wraps around my neck and helps me keep it stable while Carole and my dad were helping me walk! I really liked taking some steps! It was fun and I did not cry at all! Wow what a difference the world is from up here! My mom and dad bought everything we needed so we can practice walking at home! Thanks Carole for having so much confidence in me and getting me up on my feet!

Love Malia