Malia Moore

It is tradition at a Quincienera party for the dad to have his dance with his daughter. My daddy and I had been practicing for over a month for our big day together! Dad picked out the song by Bruno Mar’s Just the way you are. The words could not be more fitting…. Since I have my new stander and am able to be on my feet we all agreed that the dance together would be in my stander. We practiced sometimes three times a week! Cinthya would get me ready and then we would play the song over and over until we both started feeling the groove! Dad had to practice spinning me around and holding my hand and of course practice not to let the wheels of the chair roll over his feet! Haha!

Each day we practiced the better we got! It made me feel so good to dance with dad. Something all girls love to do with their dads is dance with them. I felt so blessed to have the opportunity and love and admire my dad so much. He is amazing to me and I love him with all my heart. Cant wait for the big day to show everyone our moves! A little pic of me and dad on one of our practice days!

Love Malia xoxo

Just a glimpse into what went on that day! Dad was paying very close attention. This was at the end he then cut the mold off! I should be receiving it by the end of July!

It has pretty much been inevitable that I was going to get scolosis one day. It is hard not to when you are sitting in a wheel chair for the majority of the day. We have kept an eye on it over the years but recently in the last six monthsHe works at the Children’s Hospital and has much experience with working with children in wheel chairs. He was very nice and empathatic with us. He suggested that we try a corset six hours a day and recommended a man from San Jose who makes them. My spine is at a 50 degree curve. He looked at my xrays and said that I still have lots of potential to grow. 

It has pretty much been inevitable that I was going to get scolosis one day. It is hard not to when you are sitting in a wheel chair for the majority of the day. I had a major growth spurt and that did not help with the curve worsening. We scheduled an appointment with a physiatrist/scoliosis doctor! have kept an eye on it over the years but recently in the last six months I had a major growth spurt and they did not help with the curve worsening. Thankfully, my therapist, Cinthya had a good doctor to recommend and he has worked most of his career at the Children’s Hospital and with kids in wheel chairs.

The X-Rays showed a pretty significant curve. Our appointment was at 6pm. Dr. Vargas was very empathetic towards me and my family. He said that my curve was at 50%. A spice with a curve at 50% can be operable however we are not going to go the route of surgery. He suggested that I be fit for a corset. He said that 50% of the kids that use a corset can cure the curve and the other 50% will maintain the curve from worsening. He also said that my xrays showed that I have much more room for growth. As a matter of fact quite a bit! Hopefully we have caught in time and will have good results from the corset. I am supposed to wear it for six a hours a day. It is rigid and will be hot but we are going to give it a shot. 

The following weekend a specialist came from San Jose to my house and measure me for my corset. He and his assistant arrived Saturday night and they stayed in my old home. Sunday morning they came to wrap me up like a mummy and take the measurements for my corset. It took 45 minutes and I was so very patience with them as they turned me this way and that way and the plaster that they use to make the mold would get hot. I heard them say what a great patient I was! They were very nice and knowledgeable as well.

It will take about six weeks to get the corset made. After it is ready I will then have to go to San Jose and meet with the doctor to get his opinion on the fitting and hopefully we do not have make any adjustments to it!! I will keep you posted on my progress.. We are all hoping it helps and that my scoliosis does not worsen!

Love Malia

Wear your purple today to support Epilepsy Awareness! Around 50 Million people worldwide suffer from Epilepsy.

My first seizure began when I was six months old. They were called infantile spasms, they are a type of seizure that is very debilitating. These spasms lasted for many years. Around the age of 2 I began to have another type of seizure where I would stop breathing and my face would turn completely blue. By the time I was five my parents had been advocating and searching for an alternative route to medications. You see I have practically tried them all but continued to suffer with seizures.

Thanks to the brave little girl Charlotte Figi (rest in peace) and her family we discovered Charlotte’s Web aka CBD oil. At the time, cannabis oil was completely taboo and not allowed in Costa Rica or in Texas but somehow someway my parents found a way for me to try it. 🙂 It was incredible I went 6 months without a seizure. I was so alert and was able to progress in my therapies. I smiled a lot, I felt better than ever. Then I got sick and was hospitalized and the intravenous antibiotic side effect was seizures. On day five of the antibiotics the seizures came back and they never left again.

Over these last 14 years I have experienced pretty much every type of seizure there is such as absent seizures, myoclonic, partial, and tonic clonic seizures. The older I get the stronger and longer they are. My parents yet again advocated and fought for me to try the Vagnus Nerve Stimulator. In 2019, I had the surgery and the placement of the device. It helped reduce my daily seizures from 7 to 9 a day by 50%. Those are pretty good numbers considering how many and how strong those 7 to 9 seizures were a day. I will take anything to have less.

Today I can go a day or two without a seizure but when I have one it is a doozy. Sometimes I can just have a few short jolts and we swipe the magnet across the VNS device and it stops, but other days nothing will stop my seizures except an injection of Valium. Sometimes we have to use more than one bottle to get them to stop and can go on as long as 45 to over an hour before my body stops moving. Right now this happens every 4th or 5th day of the week. It is almost like clockwork. You can count on me having one of these big seizures once a week. When this happens my body stiffens, my eyes roll back in my head and my arms and legs jerk intensely. It is scary sometimes, I have had fellow friends who have passed away in the middle of a seizure. I hear my mom and dad praying every day for them to go away, to find something that will help me at least reduce the intensity of them. I feel for those who love me and have to watch me through a seizure. It is so hard for them and I know how helpless they must feel. I have been on three medications plus the oil for many years. We introduced a different med recently we were for sure that it was going to help but it did not. I am almost done weaning off it and now have another drug I am trying and hope to see some good results from this one.

Today on Epilepsy Awareness, I want to let all those who suffer with Epilepsy around the world know that I understand. I support you. I pray for you and for a cure. Very proud that MaliaMoore.org donated generously to the CURE EPILEPSY foundation this year after my benefit. We can only have hope and faith that one day this devastating brain disorder will have a cure.

Love Malia

We had such a good day celebrating Halloween! Great friends good laughs, and lots of art and creativity! I had a seizure free day which in turn allowed be to enjoy the day and have fun with my friends! So blessed! and so much fun!