Archive for September, 2017

My 9th annual benefit!

Saturday, September 30th, 2017

Family, friends, giving and love; this is what represents my benefit. Giving comes in many forms starting from Threadgill’s who let us have their entire outdoor space to hold our event to the musicians who volunteer to play every year. Our amazing volunteers travel from near and far and dedicate much time to help make my benefit a success.

The silent auction is a beast of its own; we can not thank enough Tressa for the time and energy that is put into itemizing and organizing each donation. Holly, there are no words to describe how much we love and appreciate you and all your friends that continue to make Malia’s benefit a huge success each year. Without you would there would not be a benefit and we are forever grateful for your support. Our core team who has been with us for the last nine years, you all know who you are and we love you.

A big thanks to Cline who stepped up as guest MC this year to help take place of Janet who was unable to attend. Thanks to all the wonderful people who donate their homes each year and for every single item donated. Most of all a huge thanks to all of YOU that come each year to participate in celebrating ME! Thank you for taking time out of your day, for supporting me and my cause, and for giving like you always do.

My Uncle Jesse kicked off the start of my benefit and within a half hour later he was talking with my mom about a major crisis that was going on! Aunt Debbie had informed Jesse that Molly their dog had been bitten by a rattle snake! Yes a rattle snake! He was not doing well at all and Uncle Jess and Debbie had to leave the party to go save their dog! It was if we were in a Clint Eastwood movie! Did this really happen??? Yes it did and only in Texas!

The night went on and there were cameo performances from my mom and Holly! Cline continued to do a great job through out the night! It was easy to introduce the bands they were some of the very best. We sure did miss you Uncle Jesse but understand why you had to leave and so happy Molly is doing well now! whew!

One of the nicest surprises ever was that my Uncle Blaine from Canada came to my benefit this year! It has been years since I have seen him! I was not only able to get to hang out with him but his sweet lady friend Lorna. They were so sweet to me and I had an amazing time being able to spend time with them both! I hope they come back next year and fingers crossed maybe a trip to Costa Rica! :)

Last year my cousin Sheldon approached me with the idea of him and his friends playing the opening spot! They did an amazing job playing some sweet jazz renditions. It made me proud to see him up on the stage! He is a percussionist and a very fine one at that!

The evening was spent with lots of love, laughter, dancing and friendship. At one point in time I went up to the dance floor and took a few spins with Naty and my parents…. We had a great group of dancers including a bunch of my lil cousins and Connor! Thanks to all of the special needs mom who came to support me and my cause. Kathy, Daphni, Joey, and Paula it meant the world to me to have you there. I was so happy to see my buddy Grace! She is Paula’s daughter and has Liss/MDS like me! She is 16 years old!!! We sat together throughout the benefit. We missed you Megan, but know you were busy raising money for The Parker Lee Project as we as well were trying hard that night to help raise money for TPLP!

The biggest thanks of all is to all of YOU!!! Thanks for the support, the belief in me and my cause. Why do we do this each year? Many reasons one being LOVE. It is a night of togetherness, time to forget the worries of the day, time to appreciate the little things in life. Since I first started writing this blog my mission was to bring awareness about lissencephaly and hope to all children who struggle with disabilities and diseases. I have hope that making people aware of my story will help others to open their eyes–and their hearts–to children and adults with disabilities. My only wish is that after 9 years I have somehow accomplished this feat. I am proud to say that MaliaMoore.Org has donated over $25K to Lissencephaly research over the years! There are continued donations to research of Medicinal Cannabis, and a brand new couch set to the ICU unit of Children’s Hospital. The gift of giving is good especially when continuing to pass it along.

This year with the total devastation and destruction of Hurricane Harvey, we wanted to help the special needs communities that were affected by Harvey. So many children lost all of their medical equipment and supplies. I myself know how hard my parents work to try and get support from insurance companies to cover the every day costs of maintaining me and keeping me healthy. It is not easy and an ongoing battle. I can’t even imagine what these children are going through without their supplies. It can be life threatening without them. We proudly gave The Parker Lee Project $4000 in hopes that our donation will help other kids out there like me and that they can get new supplies rapidly. TPLP is a top notch organization! We are forever grateful to TPLP for their continued support and for all the help they have given to me over the years.

Again thank you all! Thank you for the gift of giving in every form possible and a big thanks to my mom and dad. Thanks for believing in me, for never giving up on me and for always fighting for me. I found this quote that it so true!

Every child is a different kind of flower……
and all together make this world a beautiful garden…..

Love to all,
Malia xoxoxo

The gang!

Saturday, September 30th, 2017

My waterproof chair!

Saturday, September 30th, 2017

Morgan’s!

Saturday, September 30th, 2017

MORGAN’S WONDERLAND

Saturday, September 30th, 2017

Imagine a place of being accepted with your disablilties where everyone is smiling, kind, open minded, and big hearted….. There is such a place. It is called Morgan’s Wonderland.

On Saturday we took the van and headed to San Antonio Texas. Dad was driving down I35 a notoriously dangerous interstate! While flying at 75mph we were behind a big 18wheeler when all of a sudden his tire blew! The tread on his tire flew off and came bouncing down the road and headed straight at us! Dad was quick minded and lightly swerved to the left but could not change lanes as there were other cars. We then ran over the tire bump bump bump, it sounded bad! We pulled over to check and see if there was any damage but thankfully there was none. Whew!!! So grateful we were all safe!

My cousin Lily and her family met us there as well as my sweetheart Connor! Daphni and Connor meet us there every year! It is our annual tradition! This is our 5th year to go to Morgans!

This year was even more exciting as Morgan’s dad built a water park next to the theme park! Where do you find a place where you have a Wheelchair Valet and can exchange your wheelchair for a waterproof one??? Amazing! It was very busy day at Morgan’s and we spent the first hour swinging, sliding, and riding the rides! We headed to the water park and I exchanged my wheelchair out for one that could get soaked! Off we went through the fountains! Morgan’s has different water temperatures for different likes! I prefer the temperature of my water tepid! Naty, Dad, and Mom took turns running me through the water! I didnt even mind the water splashing in my face! Fun fun fun!!!! Thank you Morgan for inspiring your dad to have such vision, inspiration, courage, and the will and unconditional love to make his dream and all of us kids with special needs come true! Until next year!!!
Love Malia

Hope Texas!

Saturday, September 30th, 2017

The Woodlands with Jenn!

Saturday, September 30th, 2017

first leg photos!

Saturday, September 30th, 2017

My 9th trip to Texas!

Saturday, September 30th, 2017

We pulled out of Delicias on September 7th to begin our annual journey to Texas! Besides from being a bit phelgmy on and off for two weeks, I managed to get off oxygen and was feeling good for my trip! We went to San Jose and stayed with our dear friend Krystal. We always need one full day of rest before putting me on the airplane.

On the 9th my mom carried me out of bed at 5am and we headed to the airport. I was still sleeping when we arrived to the airport! In all reality, considering all the things we have to carry with us the trip to Houston was a breeze. Mom and Naty had to change me in the bathroom. This would be the first time I had to be changed on the bathroom floor. We had a big floor mat that we had brought with us. It is disappointing to me that the San Jose airport did not have a place or table to change me. It is degrading to have to be lying on a public bathroom floor. The flight was on time! Mom and Naty only had to change me four different times on the plane! Thank goodness those two are fast changers!

We arrived to Houston and breezed through immigration and customs. :) My Aunty Theresa had driven the day before and left us her minivan for us to have to drive around! Dad went off to find it and Naty took me to the bathroom to change me in Houston. Amazing difference. The bathroom in Houston had a big changing table, was super clean and it was very convenient and easy to change me! Naty and I were super impressed! Hats off Houston!

We loaded up the car and headed out to Jenn’s house! This is the second year we are staying with her! My mom and Jennifer have been friends for over twenty years! We had a really nice time! I did not have such a great night of sleep but that is to be expected! It had been a long day of traveling.

The following day we loaded up and headed to Poppy and Gammy’s house. They were anxiously awaiting us! It has been a year since we have had some hugs! The time spent on the ranch was much fun! We went for long rides in the buggy around the property! One day me, Naty and dad went down to the tank and sat on the pier watching the birds fly by! We saw a bunch of deer too! So beautiful and peaceful. I always love my time there! After six days of visiting, we loaded up and headed out the door to Lockhart to see my other set of grandparents, granny and paw paw Brown and my Aunt Debbie and Uncle Jesse!

We arrived late that afternoon and everyone was very happy to see me!! The next day we met Jennifer and Todd at Smitty’s! The best BBQ in Texas! It was fun and we had a nice time visiting! The following day was our big trip to Morgan’s Wonderland but that deserves an entire blog post by itself! Sunday Uncle Jesse and Aunt Debbie arrived as well as uncle carl! I didn’t get to see our good friends Debbie and Chris as both of them had the sniffles and didn’t want to take a chance to get me sick! Granny and paw paw have a buggy too we took a cruise around the place as well! It was fun times out at Lockhart!!! We always have fun seeing everybody!
Love Malia