Archive for September, 2018

Coming Home!

Sunday, September 30th, 2018

September 26th,2018

Thankfully after taking the antibiotic that mom brought for my SIBO flare up I began to feel better. I was able to relax and sleep a bit. I have not been sleeping much at all due to being uncomfortable with my tummy. My gran mal seizures were on the rise and the night before we flew home to Costa Rica I had three of them again. We were all a little anxious about the travel day. We have so many things that we travel with and more than anything mom and dad were just praying for no seizures, nor me getting upset over my tummy.

Besides the flight being delayed for an hour, due to weather, everything went great. I was such a trooper on the plane. I did not have any seizures, I didnt sleep either but at least I was comfortable in my seat. We had no problems at the airport and loaded up ALL our stuff in a taxi van and off to Krystal’s we went. We arrived late that evening. The following day was a rest day, and we were scheduled to go home Friday. That night I began to have a seizure and it would stop then start again and this went on for a few hours until mom wrote the Dr and decided it was time to go to the hospital as I really could not get the seizures to stop on my own.

Off we went to ER, I was administered Dilantin via an IV and Diazapam. I drifted off to sleep, and we stayed in ER for 7 hours, Dra. Castro came down to check on Malia, and we all decided that it was best for me to stay the night and be monitored. I slept most of the night. The following day we stayed until 5pm I was having spasms but not like before and since the IV popped out and there was no other way to administer drugs except orally we decided to leave. We went to a hotel across the street and stayed the night. The plan was to go home Sunday. I did pretty good that Saturday night and we headed for home Sunday morning.

Not sure what has caused the regression of this type of seizure. Could it be the antibiotic I was taking?? Hoping that is goes away and never comes back! We caught the morning ferry and we were home by 1:30pm.Boy was I so happy to be home… Finally my own bed!
Love Malia

A Decade of Love! 10th Annual Benefit

Sunday, September 30th, 2018

We were told she would only live to be 2. We decided to have a fundraiser for her care. In reality when told as a parent your child will only live to be two you make a decision right there and then to defeat those odds and prognosis. So began the Malia Moore Benefit.

We made it through the first year onto the 5th and decided why not continue to celebrate each and every year our sweet Malia lives? Once a year we make our journey to Texas. Only a 4 hours flight across the Gulf of Mexico, it may seem easy to those of you who travel with your kids all the time but with Malia it truly is a JOURNEY. We left Costa Rica on September 8th with 8 suitcases in hand and 6 of them empty. We must take advantage and return with medical supplies! On September 22nd we celebrated a DECADE OF LOVE. A true accomplishment for our sweet girl.

This year Malia’s newest nurse/therapist Roxana was denied her visa and unable to come to the party. Thankfully Maria Jose, and Natalia came to the rescue and were able to split the time away between the three weeks we were gone. Malia is so blessed and so are we to have such amazing strong women in her life that love, care and support her. We were sad Roxy couldn’t come but so relieved that MJ and Naty could. Making a journey that far with so many things ( mini hospital) would be no easy feat by ourselves.

Behind the scenes of organizing the benefit is no small deal. We begin the planning in April, and the hard work and dedication provided each year from our amazing friends and family is unreal. From designing the flyer and T-shirt to the distribution of the flyers no small thing is left behind. It’s like planning a wedding each year but it is much more than that, its a reminder to all how lucky we are to wake up and take a step out of bed, to be able to feed, bathe, and dress ourselves. A reminder that we don’t have to live in fear of a horrible seizure sneaking up only to take you down so hard that you are not yourself until hours later. A reminder that Liseencephaly/Miller Dieker Syndrome is real and that there are unfortunately many children throughout the world that suffer through it.
The silent auction is a beast in itself. The items donated from friends across the world, (three very special women help with the majority of that),the organizing of the items, the actual auction day and auctioneers, the setting up of the event place, our fabulous MC’s and THE BANDS! The amazing bands that play for free each and every year because they love of our girl. We are so blessed that there are not enough words to describe how much it means to us all the friends and strangers that come to celebrate Malia.

During the show I saw an older man watching the bands sitting alone and enjoying the music. He was there from the start. I thought to myself I wonder why is here? Is he a patron at the restaurant just enjoying the free live show? So curiosity got the best of me and I asked him what brings you here today? He says ” I love Threadgills, (the venue we were at) and I saw on their website the benefit they were having for this little girl.I went to her website and I read her story. I thought this girl and her parents are fighters, I want to meet them.” He drove two hours from San Antonio to come meet Malia and hear the great music. His sincerity and kindness brought me to tears. We had a great time at the benefit together. He was so kind and so real.

Unfortunately this year Malia had a flare up of her SIBO, Small Intestinal Bacterial Over Growth… She has not had to battle this for close to two years. On Friday, the night before the benefit and at our annual social hour she became fussy and was crying a lot. If you know Malia, you know she never cries. It takes a mountain of pain for this girl to cry. When she started fussing our radar went up . It subsided that evening but on Saturday the day of the benefit she was fussy again and then literally minutes before we were ready to walk out the door to her party she was hit with three Gran Mal seizures right in a row. We had to sedate her to get the seizures to stop. Natalia was there with her and we talked about it for a while and decided after almost an hour later that Breck and I needed to go to the benefit without our little girl. We left Malia and Naty behind and we went with our heads held high. The show must go on and Malia will pull through this with some time! We never doubted she would not pull through and come to her party.

Many of you may know that people that come to the benefit don’t come to see us but to see our Malia. Every question asked was where was she???? It was hard to speak the truth, that the seizure monster had stolen her gran entry but that we had faith she would come out in the end. We were in constant communication with Naty and at around 8pm she told us she thought Malia was ready to make her entrance. What perfect timing… as I had planned to sing to Malia with the last band Twilight Trio, Malia’s song, Three Little Birds. Breck went to go pick up the girls and Malia came rolling in minutes before I went on stage to sing her the song we’ve been singing to her since birth…. Don’t Worry About a Thing cuz Every Little Thing is Gonna be Alright.

Thanks to Threadgills for supporting us these last two years. Working with you has been a complete joy. Danny you and your entire staff were awesome to us. We are sad to see you go and the reason behind why your doors are closing. We hope you know your legacy will live with us forever. Thank you from the bottom of our hearts for giving us your incredible place. It was truly a ROCKING GOOD TIME!

Malia you are amazing. You light up a room where ever you go. Your smile speaks a thousand words and your eyes even more so. Your courage to live and fight through each day amazes us all and that is why so many come to see you, work for you, play for you, and admire you from afar. Thanks to all of you who come each year… who donate , work, love, play music, and for just being there to support us and Malia’s cause. It’s not just about raising money its about raising awareness and each and every year you come we are able to raise the bar just a little more.
We could go on forever thanking each of you by name, but you all know who you are and how very much we love and adore you. We did an amazing job this year and are proud to announce we raised $25K and a portion of our proceeds will be donated to Research of Lissencephaly and The Parker Lee Project. Thanks to The Parker Lee Project for the legacy you’ve made for your beautiful daughter Parker and how many children’s lives with special needs you help on a daily basis. TPLP has helped our Malia more ways than any of you could ever know. ❤️
We love you all, Rachel Breck and Malia

My Annual trip to Texas!

Sunday, September 30th, 2018