Lissencephaly Awareness Day Our Mini Story!

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.

Leave a Reply