November

December 2nd, 2017

November came and went so fast that I can’t believe we are already into the second day of December! I have been busy getting to know Roxy and adjusting to the new changes. Roxy and I are getting along great. She is very attentive to my needs and is such a big help. She is very sweet to me too which is always nice!

My seizures have been okay, not great but not as bad as before. Some fun things I did in November was to go to the beach with mom and dad and hang out with dear friends of ours. About a week ago I somehow caught a cold not sure how that happened as I had not been out of the house much at all except for strolls on the property and some beach time! I had a high fever for a couple of days but thankfully it went away! I have had to be on oxygen and getting lots of respiratory therapy and nebulization treatments but I am doing much better and coughing a lot. Very very grateful that we did not have to go to San Jose and that I did not have to take an antibiotic!

I am getting excited as both my grandmas are coming to see me, and my paw paw brown too…..We will all be having Christmas together this year which is the first time in a very long time! We didnt do a big Thanksgiving this year just had a few friends over… So grateful for so many things. Most especially my health and a decrease in seizure. I am also grateful for all those who love me so…..
Love Malia

scary!

December 2nd, 2017

Naty and Halloween!

October 31st, 2017

Halloween is always fun in my house! What a nice surprise for me as Natalia came to see me Monday. She is here for the next three days to help Roxanna with my exercises and of course just to spend time and hang out with me! My mom asked her where she wanted to sleep? She replied with Malia! So Naty and I got to cuddle together and sleep in my bed while she was here visiting! We had lots of fun, and Roxy did a great job and picked up very quickly on all the new exercises that Naty showed her.

On the day of Halloween, I was a sweet butterfly! Genesis came over and we had such a good time with Roxy and Naty making crafts! We did face painting, decorated cupcakes, carved out pineapples and made halloween lanterns! It was fun and later in the day our neighbors Chris and Susan came over dressed up in costume and we all had dinner together! We put on some fun spooky Halloween music and did the Monster Mash in the kitchen! What a great time!

The time spent with Naty was cherished. We will always be great friends. I am so blessed and loved.
Love Malia

Seizure Monster Go Away!

October 31st, 2017

For some reason my seizures have decided to get out of control. Having three grand mals in one day is unheard of with me and won’t be tolerated! I have put on my boxing gloves and am fighting back. It’s so cruel how they suck the life and air out of me. My day is ruined after having one of those. What went wrong? Where did we lose control? Why is this happening? I have been so good in so many other ways! We started seeing more seizures when I was in Texas. The gran mals started popping up one every other day. At the end of our trip in Texas, when we were driving to Houston I had one in my car seat. We had to exit and pull off the side of the road. When this happens it literally consumes me and it is very frightening to watch. Once we got back to Costa Rica, mom started investigating and asking more questions to our Pediatric Cannabis group.

It was suggested that I try to reboot my endocannabinoid system. You might wonder what that may mean! It seems through research and experience from others that the CB receptors can fill up and become used to receiving the cannabis oil daily. The system needs a reset. So that is what we did. My mom and dad took me off my cannabis oil for five days straight. The seizures began to get better. I started back up on my oil but mom cut it back drastically. It is called micro dosing and you know what? It seems to be working. I have had a great week with Roxanna, I am not sleeping in until noon. I am active, more alert and waking up at 10! It worked I have seen a 75% improvement in my seizures since rebooting my system. Now lets just hope and pray that it stays that way! Seizures are very hard to battle. They can start up over the smallest thing! I am just happy that I have had a good week and that I am feeling good again.

So seizure monster go away, leave me alone, and don’t come back please!
Love Malia

Roxy!

October 31st, 2017

Roxana Vargas comes from Perez Zeledon, she recently graduated from nursing school. Due to the nursing industry in San Jose and surrounding areas it is difficult to find a full time job in nursing and thank goodness for us! :)
Roxy was one of the last girls to be interviewed before my big trip to Texas. She is 24 years old smart, funny, and Vegan. We hired Roxy a few weeks before we left for Texas. She has been with us now for a month! Roxy is very sweet and a fast learner. Although she is not a physical therapist she has learned many of my exercises from Natalia and in this last month we have been working very well together. The most important thing is that we get along great and she shows me much attention and love.

Change is never easy, but it sure makes things better when someone kind and caring like Roxy comes in to fill the shoes of my dear and great friend Natalia Mora. Each therapist has been awesome and amazing in their own way, they give their time, energy, and love to me and that really is all that I ask for. I am so blessed to have such amazing women come into my life. I am looking forward to this new year with Roxy and the many adventures we will have together.

Since it takes Roxy almost 12 hours to get back to her family she is only leaving the finka once a month. Roxy likes to garden so she has plenty of plants here to garden with! Welcome to our family Roxanna! We are happy to have you on board our team! I am looking forward to getting to know you more and more each day!
Love Malia <3

Lara Price singing to me!

October 12th, 2017

Benefit fun!

October 12th, 2017

My 9th annual benefit!

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!

September 30th, 2017

My waterproof chair!

September 30th, 2017