Archive for October, 2013

Three Little Birds, Sung by Mom

Saturday, October 19th, 2013

My 5th Annual Benefit!

Wednesday, October 16th, 2013

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.

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,

Lockhart day 14

Saturday, October 12th, 2013

After coming back from Grandpa’s we went to Granny’s in Lockhart. I have two sets of grandparents, in Texas so much love to be spread around! Dad went in early to be with some of his friends and mom and MJ and I stayed Wednesday and Thursday at Granny’s before heading into Austin on Friday. I did a little bit of working out with MJ. We actually had a great therapy session together one afternoon on the balcony of my grandma’s.

Friday morning we headed into Austin. It was a very busy day; friends were flying in from all over Karen, Jack, Kate, Kathy, and Krish from Canada. It also was very stormy. A big rain storm was headed to Austin by noon and it was pouring rain by the time we arrived. My parents have their annual party without kids every Friday night outdoor’s at Freddie’s. I was okay with that as MJ was staying with me and Grace came back early to hang out with us! I am so blessed to have so many friends and family that love me! I am really excited to meet Kathy and Kate for the first time and Megan too! They have been telling my mom they are so excited to snuggle with me!! Mom & dad took the Northerner’s country dancing at the Broken Spoke after their dinner party at Freddie’s. From what everyone told me a good time was had by all!! MJ and I watched a movie together and had a good time hanging out at the house.

That night I was not so keen on sleeping. Trying to sleep in a new place sometimes is difficult for me! I finally managed to close my eyes around 2am! I am looking forward to tomorrow! Cant wait to see everyone!
Love Malia