Lissencephaly Awareness Day Our Mini Story!

September 8th, 2020

It was a life choice to move to the Nicoya Peninsula, Costa Rica. In 2000 my husband Breck and I loaded up all our belongings, packed up an old Ford, and drove down to Costa Rica from Lockhart, Texas. The road less traveled is the road that you take to get where we live. The capital of Costa Rica, San Jose, is where all the doctors, hospitals and modern-day conveniences are located. In order to get there, we have to drive rugged mountainous terrain, cross the Pacific on a ferry and be in the car for 5 hours. It’s an adventure alright, but well worth it! Once you arrive here the beaches, nature, flora, and fauna are amazing! The culture, and Costa Ricans are even better! This Texan/Canadian team met on an airplane to Costa Rica in 1996 and decided to join together and pursue our dreams to live a different kind of life. In the year 2008, we opened a landscaping home and garden center and on June 17th we had our sweet girl Malia Claudia Moore.

The end of my pregnancy was rocky. I somehow contracted the CMV virus without even knowing it. I had felt great the entire time I was pregnant! Malia’s birth was by caesarean; she stopped growing in the last trimester. She was tested immediately for the antibodies of CMV. We had been told if I had passed CMV to her she could be blind, deaf, and mentally disabled. The tests came back negative! We were thrilled! We had rented a home up in the mountains of San Rafael Escazu, and we took Malia home the following day. During my pregnancy, the doctor heard an irregular heartbeat and saw dilated lateral ventricles, he suggested following up on the findings. Six days later we had scheduled appointments to see a cardiologist and have an ultrasound on her brain. The first appointment was the ultrasound. The doctor spent what seemed like hours to us passing the wand over and over Malia’s small head. The look of concern on her face made me squirm with worry. She finally finished the ultrasound to tell us that Malia had a rare brain disease called Lissencephaly. LISSENCEPHALY ?? What in the world is that? “Your daughter will never walk, talk, or function on her own.” Bam…. Take that. The following cardiologist appointment was difficult as I couldn’t stop crying and the doctor looked at me and said, “Don’t worry it’s just a murmur we can fix it and Malia is going to be okay”. He didn’t understand that our lives had just been completely turned upside down from the news of the previous doctor. We harrowingly escaped the CMV virus to be diagnosed with LISS. Friends and family told us we would need to come home. How can you take care of a special need’s child in a third world country and especially out where you live? Two months later through genetic testing, we discovered that Malia as well had Miller- Dieker Syndrome, meaning that she not only has a smooth brain she is missing the 17p 13.3 chromosomes. Breck and I were not carriers it was De Novo. It just happened, we were destined to have this angel! Fast forward 12 years and we are still here on the Nicoya Peninsula, thanks to Malia’s incredible team of medical doctors, our family, friends, and all those who support Malia near and far through our benefit held each year!

In order to arrive quickly to a hospital in San Jose, the only option is to fly in a small single-engine plane. We once were kicked off the local commuter airplane when Malia was sick and was taking oxygen from a tank. The pilot said we couldn’t have the tank onboard and told us to get off and yes just like that we had to leave the plane. We had to wait an hour for a private plane to come – a Cessna 4-seater. Trust me, flying over the mountains being tossed around like a boat during a storm with your sick child in arms was definitely exciting and nauseating at the same time! Malia gained the nickname Little Bull by the nurses in ICU on that trip. We have never had a dull moment since Malia arrived! The stories are many! Malia has survived pneumonia three times, a major kidney infection, 2 hospitalizations for status epilepticus, was intubated in ICU for six weeks with a UTI that caused sepsis, and then pneumonia, and it took us three months to get out of the hospital and back home. She is a fighter with incredible strength like all our lissencephaly kids are.

Malia’s seizures are now our biggest battle. For the most part, Malia is a healthy, happy kid. It’s the seizure monster that takes its toll on her. We have tried every drug out there (minus barbituates) to get the seizures under control. CBD oil did wonders when we first started it, and she went six months seizure-free. We became pioneers in discovering Charlotte’s Web thanks to beautiful Charlotte Figi and her story we watched on CNN many years ago. We persisted in getting CW and later became advocates in the legalization of CBD oil here in Costa Rica. Malia’s insurance doesn’t cover much. We heard from other Liss parents about the VNS, one mom, in particular, a good friend Daphni Hamilton. Her son Connor, also a good friend to Malia, had great success with the surgery! We discovered Costa Rica did have the VNS implant at the children’s hospital. It is a social health care system and 12 kids are picked yearly for the surgery. We asked Malia’s neurologist if she was a candidate and sadly enough she was denied. The hospital picked kids that had more progress than Malia. No parent ever wants to be told that your kid is not good enough for something. So we began to research and found out that sometimes if your insurance will not pay for the surgery the company will donate the device if and only if everyone else donates. Amazingly after much advocating her doctors and the private hospital, everyone came on board and donated the device, surgery, operating room, and a night at the hospital. It has been a year since the operation and we have seen a 40-50% improvement in the reduction of seizures and intensity. We are so blessed and grateful for everyone who helped us achieve this great feat. Malia loves her home, she lights up when the parrots fly by, she likes to hear the monkeys roar, she loves to swim, adores her strolls, goes to the beach, loves to read books and make paintings with her hands and feet. The pros of living here outweigh the cons of not being close to a city.

In short, it is an unplanned journey being Malia’s parents. The life that was given to us depended on how we perceived it. Malia’s profound medical disabilities and complex medical challenges have molded who our family is today. A family that takes the challenges presented to us in full force yet receives the strength, determination, light, hope, education, and love from our girl we call Little Bull.

1 year anniversary VNS Surgery

August 24th, 2020

Today is my one year anniversary since my surgery! I am so very grateful for all who participated in helping me get the device donated to me, to Hospital CIMA, and all the doctors and staff who gave their time to me. Many people ask me often how is it working. The device has given me a 50% reduction in seizures. Having 50% less seizures a day is a great thing. We believe it has helped in many ways. Before the surgery I could have up to 6 or 7 a day. Now I may have one a day or somedays none, but then at certain times during the month 3 hard ones could hit me in the same day! I do know that I am better since the surgery and hopefully continue to get better seizure improvement every day!

Love Malia :)

Catch Up!

August 23rd, 2020

hello to all my followers and forgive me for taking so long to catch you up on my progress and what I have been doing all these months. I decided to fill in the months that I did not write with pictures. Here I will bring you up to speed with all that has been going on in my life.

My last journal entry was about the benefit in November! I mean, it’s been a while since I’ve written it hasn’t been from lack of desire but more of time and that is not a great excuse I know! After having a successful benefit, we moved right into December without too many problems! We went to San Jose for our annual tree lighting at the Children’s hospital and we donated this year to their Neurology department. The show outside was great we were able to watch directly behind the big tree that was going to be lit in front of our eyes. I really enjoyed all the sounds, lights, dancing and singing.The flamenco dancers were my favorite! It is a special time for us to go into the city for this annual event. We met with the director of the Children’s hospital. She always receives us each year with open arms and a big smile. She is happy we make the 6 hour journey each year to see the tree and to continue to donate to the hospital. We love going, it is now a family tradition, and a honor to help the Children’s Hospital speciality departments each year! <3

The following day after the tree lighting, Krytal, me, mom, and dad went to the Gran National Theater in San Jose to see A Christmas Story! We went to the matinee had our usual box seats, (the only section that has wheel chair access) but they are really nice seats on first level! This was the first year me and my dad did not fall asleep! Ha ha! We all thoroughly enjoyed the music, dancing, and Christmas story!

Afterwards we were headed back home to Krystal’s when I went into a full blown hard core gran Mal seizure. Mom was in back with me and Krystal and dad up front. We thought the seizure would stop after a few swipes of the VNS magnetic but it didn’t. It continued and continued. Traffic at this time of year in San Jose is similar to LA! It is CRAZY and we were in a very less desirable side of town that you don’t want to have to pull over in.. My seizure would not subside. Mom was telling dad we are going to have to pull over. Dad was trying to find a safe place to pull over without getting hijacked. The stress was very high and I was seizing hard core. Finally which seemed like a lifetime to me and mom, dad pulled over right in front of the Clinica Bibilica hospital. He figured that if we can’t stop my seizure now there is no better place but to be but parked out front of the hospital where there was lights and security guards patrolling. It was dark by then, mom was getting out the needles and Midazolam for my injection. She safely unbuckled me from my wheel chair turned me over in the middle of the van and on my side, found the injection spot with poor light and then proceeded to inject. Note that the seizure had already started 10 minutes before we found a place to pull over from traffic and feel safe. Time is always of the essence when trying to stop a seizure especially a gran mal. After the first 5 minutes of injection my seizure did not stop. We waited 5 minutes more. It did not stop. Mom went on to pull out second bottle of Midazolam and injected me again. It went on for another 10 minutes before it finally stopped. Thank you God for making it stop. We were so blessed not to have to rush into the ER at the hospital we were parked outside of front. Before you know it, we were able to move forward and get me back in my chair buckled in and headed for Krystal’s home. It was an unforgettable night. My most favorite memory is the ballet, the singing, the family time together honoring our new traditions we have made here. The last part well….. seizures suck folks. The Seizure Monster tries to damper the spirit the happiness but we don’t let it. It’s the worse thing to have them happen to you and almost as bad to be the person having to witness them. But … I made it through and mom and dad and aunty Krystal tucked me in and all was well. I went to bed with Christmas songs in mind and happiness to have the experience of being part of our family Christmas Story. It has never been a dull moment once I arrived in this world! :)

Granny and Paw Paw arrived right before Christmas and I so much enjoyed having them here with me during the holidays! We brought in Christmas and New Year’s low key, we grilled and I watched my parents play Bocce Ball with my grandparents. It was fun, they are all definitely competitive! We were blessed to be spend time together!

At the first of December Laura Bonilla, my new therapist, started to work with me. She graduated with her degree in Physical Therapy but had not ever worked at any clinics, she instead had been working at a bank for 6 years but her passion was to be a therapist. Out of all the girls we interviewed we selected Laura and decided no other time than the present to start working with her first patient which would be me! As my parents told her, if you can do PT with Malia everyday you can do PT with anyone! ha ha! It started off a little rocky but over these last six months together we have really developed a special relationship. Laura is very kind and sweet to me and we finally have our groove when we are working out together! She pushes me and that is exactly what I need! Naty my previous therapist came and spent a week with us in January and helped show Laura some of the exercises she used to do with me. We also got Irene to come and work with Laura and me once a week until Laura felt comfortable with me.

February was laid back we stayed at home! One Sunday we went down to the beach to picnic with our good friends Nora and Luis, mom and dad says Nora makes the best fried chicken on the beach! We hung out with them until sunset and it was an awesome way to spend a Sunday. There were many weekends spent swimming in the pool as February is super hot. We had visitors Abe and Amanda from California here for a while. One Monday I went to the rodeo with my parents and Abe and got to hear the music and see all the lights. I met a new friend from Holland, Jeanel’s mom. She was so sweet to me and brought me gifts. What I loved the most about her is that she talked and talked to me! It makes me so happy when people pay attention and talk to me, even though I don’t talk back I do listen. She was great fun and we had a very nice afternoon with them! My paw paw Brown came down for a quick week visit and I enjoyed spending time with him. My buddy Genesis came over for Valentines and we exchanged cards as we always do! We are both artists and make card for each other! In all it was a great month! <3

In January, I had the honor to be the ring bearer for Mari and Alex! The wedding was in Turracares at their beautiful Finka. Mari is the older sister of Naty! My dress that mom had ordered for me on line was too small and we were in a crunch for time so Naty’s grandma handmade me the most beautiful dress ever!! It was perfect and the rose opened up as it had a snap so we could feed me at the reception without having to lift my dress up. My parents could easily pull my hose that feeds me discreetly through the rose! The day could not have been more perfect, not a cloud in the sky and my parents proudly pushed me down the aisle and I carefully held their rings until I was called to give them over! I did a great job and it was a beautiful wedding. The reception was lovely and we had a grand time! My grandparents were invited as well so we had a family road trip for the weekend together and stayed at our dear friend Krystal’s house! It was lovely in every way and feel so blessed and honored to have been given the opportunity and trust to hold their rings. <3

The first week of March, we went to to raise my VNS magnet intensity, see my neurologist, and pick up Grandma Marg. She was coming for her annual three week visit to see me and my parents. It was at this time COVID was just beginning to reach us here in Costa Rica. As a matter of fact, the day we picked up grandma was the day that Costa Rica had its first case of Covid. We tried our best to have fun with Grandma and not worry too much about the ever increasing and fast spreading Covid. Then the next thing you know the beaches were totally closed, driving restrictions enforced, curfews, and CR went on lockdown. To keep our minds off of Covid we started a family garden, we got to go to the beach once before it closed, and we made our annual cinnamon buns! CR for the first few months did amazingly well in keeping the numbers low. Grandma was getting more and more uncomfortable about the idea of flying back to Canada and then the next announcement was the Prime Minister saying all Canadian Citizens abroad need to come home! Grandma had just gotten here! She tried to go back earlier but there were no flights available so she waited until her return date to go home March 24. My mom had planned to fly to Texas for my cousin Tory’s wedding on March 14th and be gone a week, that got squashed pretty quickly. Mom knew she could not travel with this virus out there and then have to be quarantined when she got back and not be able to be around me! My dad took grandma to the airport she left our home at 9am and she would not be getting home until the following day until 5pm. She had to cross through four airports to get home and in total was traveling for 37 hours. Grandma is one heck of a valiant traveler. With Covid looming everywhere we kept our prayers high that she make it home untouched by this awful virus! She did make it and she self quarantined and thank God she never got COVID going home from Costa Rica. Whew…. It was a stressful time and still is as COVID has become rampant in San Jose, thankfully out here where I live we have only 2 cases. We are still overly careful and cautious as I simply can not get COVID!

The following months were pretty much lockdown, mom stopped going to the office and dad had closed the nursery for a while. The weirdest for me was not having my annual birthday bash with my dad! Mom would have been planning and cooking for weeks preparing for the big day! I turned 12 years old this year! My mom did make me a cake and invited by two best friends Gabriella and Genesis over for a social distance get together. It was nice to at least see them and hear their voices. I get to see Genesis more than Gabriella as she lives here on the property with us and is inside our social bubble. :) <3

In July, we went down to my dear friend Karen’s house. She was kind enough to let us stay at her place over the weekend and on the beach! Even though the curfew for the beach was 9:30AM we still really enjoyed being right on the water and hearing and looking at the waves! We managed to sneak in afternoon on the beach one day and played in the waves. It was fun! I slept alot over those days and had been having twitches in my hands and feet. Sometimes it can go one for hours and hours and it is very tiring. We were at the beach because we were celebrating 50 years of my mom! She had a really nice time,and we took Laura with us so she could help with me and that mom and dad could enjoy some time together! My dad did a great job spoiling my mom and making her feel extra special… It was a super fun weekend and it was nice to have a change of scenery!

So now here we are in August, almost the end of it too! I have my ups and downs with seizures. Some days they can be just brutal and need to be stopped by an injection of Dormicum in my buttocks. My mom has gotten really good at giving shots. I wish she didn’t have to give it to me, but sometimes it is the only way to get the ugly seizure monster to stop messing with me. There are some days I don’t have seizures and those are my best days! I am so alert and active and happy. I have an entirely different look on my face when I have seizure free days. I am grateful for them, as before the VNS I didn’t have seizure free days, except for when I first started CBD oil.. I then went six months without a seizure but that was a very long time ago.

Miss seeing everyone… We won’t be going home for a benefit this year. We had it planned to leave in September.The annual Lissencephaly Convention was going to be held at Morgan’s Wonderland this year and we had plans to have the benefit the weekend after the convention. The Liss Convention obviously got cancelled, and since there is still no vaccine we can’t get on an airplane and risk exposing me. We will have our annual tshirt fundraiser soon and next year we will hopefully be able to make the journey and go to Texas for the benefit and convention.

Promise not to be gone so long… Much love to all.
Malia <3

February

February 29th, 2020

January

February 29th, 2020

Naty Laura and ME!

My new PT

January 28th, 2020

The Holidays!

January 28th, 2020

My Costa Rica Benefit 11th Annual

January 28th, 2020

NOVEMBER 16th 2019

This year we did not make our annual trip back to Texas for my benefit and to visit my family and friends. With the surgery and the increase in seizures we decided to stay home this year and celebrate here. It was a beautiful day so many wonderful people helped to make it happen. We had the party just outside our nursery. The place looked absolutely beautiful and we had tents and lots of food and even a silent auction! Many people from town donated items to auction off. We also had two bands play and we had quite the turn out of people. The food was incredible as always. Mom had been cooking up a storm. She had made nine chocolate cakes, pulled pork, Maritza made her famous arroz con pollo, then we had picadillo de papaya made from Nora, homemade corn tortillas from Dona Ida, vegan potato tacos, chimchurri and more! Krystal came in early and helped mom with so much in the kitchen!! So grateful for all the friends and family that we have and for all the love and support that is shown to me and my family each year! :)

George, Janet, and Katie pulled off the silent auction on line in Dallas and it was a huge success as well! We also had a t-shirt campaign with my little bull t-shirt and sold over 100 of them! Very luck to be loved by so many and blessed to have you all in my life! Who knows where we will be next year but this year was definitely a winner and all in my very own back yard!

We were delighted to donate to the Children’s Hospital here in Costa Rica to the neurology department, to Dr. Joseph Gleeson lissencephaly researcher in San Francisco California and to The Parker Lee Project who is always such a blessing to so many children and families of special needs kids!

Love to all,
Malia

October 13th, 2019

Dia de Independencia Costa Rica

September 27th, 2019

September 15th 2019

Today is Costa Rica’s Independence day! We are always in Texas for my benefit this time of year so I never get to particpate in the activities! This year we did not go back to Texas, because of the increase in seizures and the surgery. We were not sure when we would be called by the hosptial and given a surgery date. I was happy to be able to be part of the day.

Roxy of course set out to make sure I had the coolest “farrol” (lantern) ever ! We made a traditional ox cart, made out of recyled products. It turned out so cute. I even had coffee and beans in my cart! Roxy also made me a beautiful blouse to wear with my skirt that MJ had sent to me. It is the typical folklore that everyone wears on Independence day. Especially the students. The day before Indepence day is when there is a parade where the kids take to the streets with their farroles and sing songs and shout out Bombas! (poems)

My dear friends, Gabriella and Genesis came over to take picutres with me as well as Irene, Luisa, Gabo and Javier! THe kids at the school began the march towards my nursery. THere we were waiting for them and particapted in the parade. We could not start at the school, as the road is not asphalted and there were too many holes in the road for my dad to try and manueveur in my wheelchair at dark! THe road in front of my house is asphalted so we were able to walk a bit of the way with kids! It was fun, and there were many beautiful lanterns. I want to give special thanks to Roxy, for helpikng me with my farrol , making my shirt, and dressing me up so beautifully on Independence Day!

Love Malia!