Updates as of March 26th, 2016
2014 was a great year for me in the beginning. My mommy and daddy continued to take me for therapies, interventions and use essential oils that insurance does not cover. I was making leap and bounds in all areas of my life including medically. I was able to be weaned off all seizure medications which had horrible side effects. I was unable to learn new things on the medications because I was very tired and in a "fog" all of the time. My last dose of these medications were February 14, 2014. By summer of 2014 I was getting use to my "new life" being medication free and my brain not "foggy". It was amazing. I was enjoying life in so many ways. I was functional during the day and was able to build on the abilities I had. I was playing more purposeful, becoming more aware of my surroundings, my cognitive delay improved, I started to "babble" and make more sounds with my mouth (although no words yet), I was not having seizures and I started to drink orally, not using my feeding tube as much just to name a few huge improvements. Mommy, daddy, family and myself were very proud of my progress.
Fast forward to the end of 2014...
We amounted credit card debt from paying for these amazing therapies, essential oils and other interventions got out of control. Although the approaches helped me a lot there wasn't any choice but to stop Feldenkrais and The Anat Baniel Method and most of the other approaches. For example, these therapies cost anywhere between $85-$225 per session. Each session includes 2 therapies a day for a minimum of 3 days monthly. That equals between $510-$1350 monthly not including travel expenses.The only option was for mommy and daddy to learn as much as they could about these therapies/approaches and work with me trying to implement the techniques. Everything was appearing to work out but I could feel things were changing. As hard as I tried to take in everything I could tell my brain was changing. Changing for the worse.
Fast forward to 2015...
My brain became very active with misfires and things were changing. I continued to be followed closely by by neurologist and continued yearly EEGs. My video EEG in 2015 showed my epilepsy was now LGS, Lennox-Gastaut Syndrome. When mommy and daddy was told about LGS they started to look up what this syndrome was capable of. LGS is rocking our family hard. LGS is a rare and severe type of epilepsy that is hard to treat and in most cases those of us diagnosis with LGS will regress and continue to have uncontrolled seizures. Uncontrolled seizures comes with life long problems like complete dependency from others for daily living activities, decline in development and cognitive abilities, thinking impairment, behavior problems and serious risk of injury. Seizures could continue to increase to hundreds daily and become more intense. Each time I have a seizure my brain is damaged. The damage depends on the severity of the seizure. This could range from hardly no damage to death. The seizures consist of many different types so there is no way of telling what type of seizure I will have next or if it will be able to be stopped. I say "next" because there is not a question of if I will have another seizure, the question is when. We are granted a scholarship to attend The LGS Conference to learn more about this horrible syndrome that takes away lives. This is very scary.
On August 14, 2015 I had a significant seizure that was not stopped even after having 3 doses of rescue medications. I was taken to the hospital. When my seizures were under control I was discharged on a horrible anti-seizure medication. There wasn't any choice since this is the only intervention covered by insurance and credit cards continue to be out of control. Due to finances, Mommy and Daddy could not start the unconventional therapies, interventions and approaches again that helped me in the past. Please click on this link to see exactly what LGS looks like.
During my mommy's research, talking to other families, joining groups pertaining to LGS she KNOWS that not doing anything is not an option. She KNOWS I currently function between a 6 month to a 24 month old. She KNOWS previous unconventional interventions and approaches work. She KNOWS these interventions are very pricey. She KNOWS we can't afford unconventional interventions. She KNOWS doing nothing will be devastating to my quality of life. She KNOWS it will be impossible for me to learn if my brain continues to seize. She KNOWS the pharmaceuticals put me in a "fog". She KNOWS I have taken 4 seizure medications that have failed me (that's when unconventional interventions came into play). She KNOWS there are treatments, interventions, "medications" and therapies out there that have help many many families gain control of LGS regardless of the odds. She KNOWS not being able to financially provide unconventional approaches the reality of my seizures becoming controlled are slim to none. She KNOWS finding a neurologist for me that understands LGS will be hard, pricey and require traveling. She KNOWS LGS KILLS. She KNOWS I am motivated. She KNOWS I work hard at learning new things. She KNOWS there is hope. She KNOWS I deserve a better quality of life I am currently living. She KNOWS we need help financially. SHE KNOWS I AM A WARRIOR.
So the bottom line is, I have LGS. This is life long. Families living with LGS have been successful controlling these horrific seizures although there is not a cure for LGS. Control costs money. My medical conditions have put a financial strain on my family. My family has maxed out credit cards to provide interventions that has helped me live a better quality of life. I am a few months shy of turning 9 years old. With donations from you I will live a better quality of life, gain better control of LGS and live longer. Please consider making a donation. No donation is too small.