Wednesday, February 12, 2014

"Fight for Life" is a movie from the 1980's that takes you through a families fight for medication for their child with intractable epilepsy.  When the US doctors told them that not only were they behind the in the treatment of epilepsy as compared to all other western civilizations, but that there was nothing left for them to do to help their daughter.  That they should just accept the inevitable:permanent mental retardation or death, the father who was an eye doctor decided to read every medical journal about epilepsy.  In doing so, he was able to find hope for him and his SAHW who took care of their 6 year old daughter during her multiple daily seizures, lethargy, exhaustion, and sometimes slow and sometimes rapid decline in mental function.  In doing his research this father was able to find hope in a medicine called sodium valporate.  The only problem was that it was not FDA approved despite it helping certain seizure disorders in infants, children, and adults with intractable epilepsy in the UK for over 10 years.  Fortunately, this doctor had the funds to move his family to England to get the medication to save their daughter and of course, because this is a hollywood film from the 80's there was a happy ending.  The irony is, that Sodium Valporate is one of the now 23 medicines that we have tried for our daughter.  This specific medication made my daughter so high that she sat staring at the ceiling with drool coming from her mouth with an occasional giggle and a more frequent screaming episode where she would rip her own hair from her scalp.  She was four years old.

Hello, my name is Virginia Spencer.  I am the wife of a United States Airman and the mother of five amazing children and I am here today, to tell you that Marijuana is a plant, that much like crocus, carrots, poppy seeds, and other plants that have properties in them that can be used in medications.  However, Marijuana does not have to be genetically engineered, nor does it have to be added to chemicals in a lab to bring out its healing properties.  It simply needs to grow.  And much like a tulip or a rose, this plant has many different varieties.  The amazing thing is each one of them has healing potential that has not only been proven but owns a patent by the US government.  You see, my 11 year old son wants to be the president some day.  Yet he can't understand why a government that sends billions of dollars in foreign aid to help children fight diseases and starvation and poor living conditions would not want his 9 year old sister to be saved by a plant that the government teaches is gateway drug, that causes addiction, violent crimes, laziness, inability to focus or see reality, and basically just get high….but that very same government also owns a patent stating that they know it is a neuro protecting that can heal lesions in the brain, reduce tumors, and so forth.

Our 9 year old daughter in the past three months, since our last visit to this building to discuss Medical Marijuana, has had four surgical procedures, 1 8 day long video EEG where she is hooked up to wires and recorded 24/7, only able to leave the bed to go to the bathroom, six trips to see her specialists in Texas, three medicine changes, 4 hospital stays, 11 tanks of her "rescue oxygen" 9 daily medications twice daily not to include four rounds of antibiotics from her weakened immune system due to all of the powerful drugs in her body that she must be tested for bone marrow depletion, liver failure, anemia, and other nutritional instabilities, as well as acidosis and ketosis.  She has had approximately 3,000 seizures in the past three months and has a brain wave pattern that means that she is constantly seizing whether we see signs of that electrical storm or not.  IN the past three months she has been placed on Hospice, and we are at the end of the road unless you vote to save her.

We did a story on the local news about Avagrace.  And about how she is such an overcomer that she pushes through and even though she may do things differently she wants to be able to do them.  In fact her therapist have had to spend more time teaching her to not push herself so hard because every time she fights for her self, she will end up seizing and regressing even more.  So we are in the constant breathe holding phase of do we push or do we just make her rest.

Can I see how many of you have children or grand children?  Please raise your hands.  How many of you would like to face the question of what is more important quantity of life or quality of life?  How many of you would like to sit down with doctors and fill out form after form of what to do when her heart stops again?  Because it has stopped five times in the last year and there are only so many times a heart can stop and restart before it is too exhausted to continue.

When we did the news story we had comment after comment of "if that were my baby I would be in Colorado already"  or "what are they waiting for"  etc.  Well first of all my husband is in the air force.  His life is owned by this location.  I am former military as well and we value our country, due process, and see it as an honor to serve.  But when you see the equipment my daughter is using it is all either borrowed or fundraised for.  My husband has be deployed to the dessert, South America, short trips stateside.  I have given birth to an 8 week premature baby while he was deployed.  I have traveled from PA to OK with a 6 month old baby, a 2 year old and a four year old by myself.  We are patriots and we are not ones to wimp out, or not do what we must for our country.

Yet, when our daughter is dying right before our very eyes.  When she is not understanding sentences.  When she is forgetting what she did four minutes ago.  We are required to split up our family of seven, travel to a new state, find new specialists (she has 9 different ones 13 if you include the ones out of state who still play a huge role in her care), new durable medical equipment companies, new places to borrow a wheel chair from (which I doubt any other facility would allow such a thing, we have been borrowing this amazing chair for four years).  Not to mention shelter, food, schools for my other kids, and someone to watch them when Avagrace is in the hospital.  and so on and so on.

When my husband deployed last year we had to go to the emergency room more times than I can count.  And do you want to know what I had to do with my other kids?  I carried a queen size quilt in my car that I would lay on the floor of the ER room next to my daughters bed so that they would be away form as many germs as possible, underneath the site of her constant seizing, hopefully out of the way of the doctors, but safe and not alone.  I have no problem doing that in colorado.

But there is something else I must think about.  How will our enlisted families income, which is already so low that we qualify for medicaid, how is that going to cover two households, in two states, medicine that is not approved by insurance (which we already face here), and a second vehicle since we are a one vehicle family?

Moreover, what happens when my military husband comes to visit his children and there is a federally illegal medication in our home?

Why is it, that the medications that she is on.  Lets see, one that is regularly used in criminals during lethal injections, one that is sold on the street so that people can get high, one that all I have to do is say its name…..VALIUM…..and everyone in this room with know the strength of it and then be shocked that my daughter takes up to 40mg of this every single day when most kids her age would take maybe 10mg for a seizure only as a very last resort once in a blue moon.

I think with all I have said you can understand why I am so frustrated with the United States Government System.  But maybe not.  Maybe you still see Marijuana as a gateway drug or worse than alcohol.  Or a drug with no research.  Well if this is the case then you have not done your homework.  CNN did an experiment with drivers who had taken medical marijuana.  They tested them at the legal driving level and then way above it.  They showed that the drivers were safer and more suited for driving than those with alcohol at half the levels.  Dr. Sanja Gupta one of the United States most famous Neurologists have scoured the country for success stories, and stores that would prove his old theories that the FDA and the DEA were right about this horrendous gateway drug.  And what he found are children like my daughter, thriving, learning, and experiencing not only a quality of life improvement but also a quantity of life improvement.

For patients like my daughter there is no telling if cannabis will stop her seizures all together and there is no telling just how much THC will be needed to help with the sleeplessness and nighttime seizures etc.  But to say there is no research is an incredible misconception in ignorance.  Marijuana was used in medical practices and stated in medical journals long before some people in the government deemed it the plant that has become the joke of many movies portraying hippy and gangster-like stupidity.  It has also be miraculous in hundreds of families that have had to flee their strict states regimes much like we welcome those from other countries who flee for help with medical care, or freedoms that they don't have.

But for a country built on the idea of land of the free, we have children dying because the states would rather hold strong to propaganda than science.  We have doctors and microbiologists and chemists and other persons that we trust with our lives that are too afraid to speak up against these ridiculous laws on marijuana because they will be blacklisted, fired, or have their medical licenses revoked.  Since when did a country that is free, dictate to the doctors and scientists what is safe and what is not?

Finally, I will end with this.  I am a Christian, I am a Conservative, I am pro-life, and I will hold every single person in this room accountable if my child does not survive long enough for us to raise enough money to move to Colorado, leaving behind my husband my last family member within over a 1,000 miles, my patriotic husband who fights every day for you to be able to sit here comfortable with what your pastors and fellow church goers say, going on vacations, and being able to provide for your family whatever it is that they need.  But I will also tell you this.  God creates all things.  This plant has a purpose.  And sometimes doing the hard things and fighting for what is right, is not popular.  But did that stop Lincoln, Martin Luther King Jr, or any other revolutionary that may have inspired you to the position that you hold in our communities today?  I don't think so.  So please, do not sit there and ignore the suffering of our family because it is uncomfortable and against the lies that we have been force fed since we were in kindergarten and first grade learning about the dangers of "drugs."