A Mother's Story

I received this from a friend we met down at 4 Paws.  Her child has autism as a result of vaccinations just like Dawsyn has Dravet's Syndrome as a result of vaccinations.  This will just give you a little glimpse of of what people really and truly have the nerve to say to us!  It truly is inexcusable!!

Your child is more important than mine… 

I want you to read these words and have them reverberate through your body like they do mine. Open your mind and put yourself in our shoes (the ones that know their child was a causality of the vaccine wars). This is what I feel in my heart NOW AND FOREVER. I gave my child for the greater good? But yet I'm called names and made to look like I'm crazy or that my child doesn't count? Why, because he was sacrificed to save yours? My friend Julie Obradovic’s words…

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This is the argument that keeps me up at night. This is the mentality that fried my baby’s brain. This is the rationale behind a vaccine program that is out of control, completely corrupt, and responsible for damaging millions and millions of lives. As long as the belief is that those damaged millions are justification for the billions, it’s okay. As Angelina Jolie says in her summer movie Wanted, “Kill one. Save a thousand.” But what about when that “one” is yours? When that “one” could have and should have been saved? When that “one” turns out not to be “one” but an entire generation of children across the globe? Well, that’s when I get angry. I have yet to meet one parent of a vaccine injured child, or a vaccine injured person, who is okay with what happened because they take comfort in knowing their sacrifice was for the greater good. The only people who believe they should are those that have the luxury of not having made a sacrifice, and worse, believe that sacrifice somehow made them safer. Only they don’t even believe they have to say “thank you” to those of us that lost. They believe they were entitled to it. To any and all who may feel that way, let me make this clear: You were never entitled to my child’s life, and I never had any intention of giving it to you.

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 AND here's a quote for you.....

Who are you to judge the life I live? I know I'm not perfect and I don't live to be. But before you start pointing fingers...make sure your hands are clean.

                                                      -Bob Marley

You made the statement to me the other night “I know something happened to your son with vaccines but I’m pro vaccine and they save lives.”  Fine, be “pro vaccine” but what you said was cold and absolutely HEARTLESS. I would never have said something like this to you as I am a mother. Would you say the same thing to a mother that had a child with cancer? No, but it’s ok to say it to a mother that has a child damaged by the very thing she was told would make her child safe.

There is so many things about this you can’t possibly understand so I will give you the benefit of the doubt…you really didn’t mean to be rude, ignorant heartless, self-centered, uncaring for the welfare of another child.

Before you make blanket statements about vaccines consider this, my child lives everyday with bleeding eczema, gut pain so bad you could only have nightmares about it. He can not communicate his wants or needs because his vaccine brain damage as rendered him speechless. He is not potty trained at 6 yrs old. He is in a special needs class.

My child was born perfectly normal. His Apgar scores were fantastic. There was nothing wrong with him physically or mentally when I gave birth to him. My son could draw at 15 months. He could feed himself. He had a great vocabulary. Then the Pediatrician gave him MMR, Verivax (chicken pox) and Prevnar 7 on the same visit. 

You may seem to think this is excessive but it is now standard procedure to give this same combo to children as young as 12 months. That night my son had a seizure and never came back and when I take my son to doctor after a frantic evening in the ER, I’m told “No, he must be epileptic it wasn’t the immunizations.”

I want you to remember before you make these types of statements that there are REAL children behind the suffering. There are REAL parents that watched their baby never come back.

You may not believe that vaccines cause autism but you don’t know the whole story because you haven’t dug deep enough. You listen to what your doctor/the CDC/the media tell you to believe. Blanket statement about a subject that you have no real knowledge on is what Mr Lowry calls a fallacy. In all honesty, if you knew and read the peer reviewed studies that I have from our own government about vaccines and brain damage you would never stick another needle in your child. There is a whole world of special interests and back door deals when it comes to the multi-billion dollar industry of vaccines. The vaccine schedule has increase by over 600% in the last 25 yrs and a 6000% increase in autism. That’s not a typo, 6000% increase. If you caused a 6000% increase in a developmental disorder wouldn’t you try to hide it too?

I know you probably don’t have any interest in finding out any of this information but I can enlighten you with information that the government doesn’t want you to hear or know. AND NO, I’m not a conspiracy theory nut. This is in black and white and is there to find if you’re looking for it.

Take a good hard look at the picture I’ve given you. Remember that this is my beautiful child. This is the little boy that suffers everyday because *I* believed I was doing the right thing by vaccinating him I was a nurse, I believed in the system. I thought all vaccines were tested effectively and in combination with each other. I was wrong. One ingredient and one vaccine have been studied, MMR and Thimerasol/mercury. Too top it off, the mercury study is now facing some very harsh criticism and may not hold water. NOT all 16 vaccines on the schedule have been tested for cumulative effects on an infant’s brain.

I am a real mother that sacrificed my baby for the greater good and instead of thanking me…you told me that my child didn’t matter.

Your compassion is astounding.



Hope Rising

The funny thing about hope is, you don't always realize that you've run out of it.  That is, until someone give you a glimpse of what could be!  I think that over the past couple of years, without really realizing it, our hope tank had run very close to dry.  It makes sense now, actually.  I can see that my negative attitudes, darkening moods and my pulling away from relationships were just that … lack of hope.  Well, that and menopause!

How could I lose hope and not even realize it?  I can trace it back.  From Dawsyn’s first seizure in February of 2002 until early 2006, Dravet’s Syndrome had been a part of our life but we never let it consume us.  In ’06, it took over with a vengeance!  For over a year, we took weekly ambulance trips to Children’s Hospital because we couldn’t stop the seizures.  Our happy, bright, beautiful girl was rapidly disappearing and was being replaced by a drooling, non-verbal child with dull eyes.  We could barely recognize her anymore.  Our hope, however, was intact!

We kept fighting to bring her back.   For three years we tried everything, homeopathy, diet, meds, more meds, different meds.  We tried anything and everything to help us gain control over the seizures.  Nothing helped … but we continued to hope.  In 2007 we began to keep detailed records.  She had 1648 seizures that year totalling over 11 hours.  We hoped she’d get better.  In 2008, she had 1938 seizures totalling over 17 hours.  We started a new treatment in November 2008 and hoped it would help.  It did.

The monthly intravenous immunoglobulin infusions (IVIG) resulted in a decrease to 363 seizures (3.34 hours) in all of 2009 and only (can I really say ONLY?) 264 seizures (3.27 hours) in 2010 to date.  We’ve stabalized!

Dawsyn started to return to us.  The sparkle in her eyes, the mischief, the smile (although usually quite twitchy) and the laughter had returned to our lives.  She ever so slowly started to recover lost skills and learn new ones.

We were pleased but couldn’t help but feel that we could be doing more.  She could be better yet.   The meds had not worked before we started IVIG; they were not working now, so let’s lose them.  They cause behaviour problems and are definitely a deterrent to learning.

Every attempt we made to speak to our neurologist about this issue was met with a firm “NO”.  The attitude we constantly received was, “She has stabilized.  Don’t mess with success.  Leave well-enough alone.  This is as good as you’re going to get.”  Our last appointment with him was when we decided to try the IVIG in late 2008.  Other than a couple of brief (5 minutes or less) visits from him while Dawsyn received her infusion, we have not spoken to a neurologist for the past 24 months.  Hope began to wane.

Two years of little change in seizure activity, we began to believe that this was going to be the way it was going to stay … unless it got worse.  There was no hope of it getting better.  “This is as good as you are going to get it” began to seep into our bones as hope seeped out.

I had to walk away just now.  Sometimes the anger and the tears overwhelm me and I have to “take a breath”.   The Oilers lost to San Jose, 4-3.  Everyone is off to bed now and I WILL finish this.

Friday, November 12, during Dawsyn’s latest IVIG infusion, I received a call from the Neurology Clinic.  Our former neurologist has moved away and someone new has come.  He wants to see us … immediately!  We could have an appointment as early as Monday.  “Seriously, MONDAY?  We’ve not been able to get an appointment for two years and we can get in by Monday?”   Apparently, Dr. Rho is anxious to meet us and go over Dawsyn’s case. 

I couldn’t wrap my mind around it and booked an appointment for two weeks down the road so that Ben could be sure to get the day off work.

Dr. Rho cut right to the chase.   Epilepsy can be dealt with in a number of different ways.  There’s drug therapy, immuno-therapy, diet and surgery.  For Dravet’s patients, brain surgery is seldom an option because the seizures are not limited to only one spot on the brain.  They have no one focal point. 

One look at Dawsyn and he says, “She’s way over medicated!”   The meds obviously were not working before we started IVIG, IVIG was definitely helping, why is Dawsyn still on the meds?  Any of this sound familiar?   First order of business, remove meds!  Ben says, “Oh, I’m gonna like you!”  

Next order of business, Dawsyn obviously responds well to immuno-therapy.   We could bump up the IVIG schedule or add a week-long dose of prednisone between IVIG treatments.  Side-effects?  Relatively less that the drugs she is currently on. 

Another option is to try a modified version of the ketogenic diet again.  We tried the ketogenic diet for nine months back in 2006/07.  It reduced the number of seizures for the first couple of months but then lost its efficacy. 

He told us about a treatment they use often in the US but is not used much here in Canada.   Why?  We’re not sure.  It’s called a Vegus Nerve Stimulator (VNS) and involves surgery.  The Vegus Nerve is a major communication link between the body and the brain.  It delivers impulses to different parts of the brain.  The VNS consists of a pulse generator (a toonie size disc) that is fitted beneath the skin under your left collarbone or close to the left armpit where it is almost invisible.  Two fine wires are run just under the skin to the left vagus nerve in your neck.  These wires carry the impulses from the pulse generator to the vagus nerve.  The regular impulses of VNS Therapy help prevent the electrical irregularities that cause seizures. 

We were in just a little shock!  What is this you are telling us?  We have OPTIONS?  Half of my brain was screaming, “WE HAVE OPTIONS!”  while the other half was raging, “Why the H-E-Double Hockey Sticks are we just hearing about this now??”

We’ve been sent home with a plan!  Really, a plan?  I’m still trying to wrap my head around it.  First priority is to wean Dawsyn off the drugs.  We started today!  We know that this will probably involve break-through seizures as her poor med-addicted little body will rebel against us taking them away after all this time.  However, the end result will be a little girl who does not have to think through a cloud of medication.  We fully expect to see a new child with unlimited learning potential when all is said and done!

Our next job is to study the information we brought home with us and decide what to do next.  It was an easy decision for us.  We will call the Clinic on Monday and ask them to set up an appointment for us with the neuro-surgeon to have the VNS implanted.   We are anxious to see how Dawsyn responds to this therapy. 

If, after a number of months, we do not see as much of an improvement as we would like, we can try the prednisone between IVIG treatments and/or diet modification.  The point is we have OPTIONS!

On the way home, we couldn’t stop grinning.  I felt downright giddy!  At first I didn’t recognize the feeling welling up within me.  It came to me in the middle of the night when I couldn’t sleep for all the thoughts running through my head.  I almost missed it … it’s HOPE!

Encouragement

I just received a private message from a friend that was very encouraging.  I am sometimes reticent to post some of my writings for fear that my own rawness will offend others.  This friend commented that one of my darker posts had spoken to her.  Her brief comment make the writing and the risk worth while ...  "I hear your heart".  Now, those same words coming from someone else may not have meant as much to me.  However, from this friend, they have meaning.  Why, because she KNOWS.   Not one of us walks in the same shoes, even when our children share the same diagnosis, but some of us walk in similar shoes.  We share common concerns and common heartaches.  


To you my friend, thank you for your encouragement and thank you for walking ahead of me in many ways and showing me that we CAN walk this walk with grace and with beauty.  Even when our "shoes" pinch our toes and cause us pain, sometimes even changing our "gait" forever, they are beautiful.  Like magnificent pair of stilettos!  I wouldn't ever change them for a comfortable pair of sneakers.

Funding Appeal from the IDEA League

International Dravet Epilepsy Action League www.IDEA-League.org Dear Friend, Words cannot describe how agonizing one minute is, let alone 60 or 160 minutes, when you are helplessly watching your child suffer through a seizure. Tragically, this is what thousands of parents whose children have Dravet Syndrome, and similar forms of epilepsy, are forced to do.  Every day and night, Moms and Dads are thrown into a combat situation where they must fight to save their child's life - EVERY day and night.  Where does their strength and courage to deal with such constant trauma come from?  It comes from love...love for their child. The IDEA-League is dedicated to helping these loving parents and children.  Our volunteer board is made up of Moms and Dads who know first-hand the unrelenting stress and destruction this illness creates in their children's lives and families.  This dedicated board, along with staff and volunteers, have accomplished many valuable outcomes including: funded two research grants; soon to be published internal and collaborative research studies; co-sponsorship of a special supplemental Dravet syndrome issue of the medical journal Epilepsia; co-sponsorship with Vision 2020 of a report on The Public Health Dimensions of the Epilepsies by the National Institute of Medicine; hosted international family medical conferences; created 13 Comprehensive Coordinated Care Programs across the U.S.; reimbursed and obtained coverage of medications for patients; and continued an online exchange with phone support for parents. But as parents, we know that our foundation has much more work to do!  The IDEA League is one of action.  We need to fund more research, partner with more doctors and researchers, provide easier access to medical research and information, distribute more educational materials, answer more questions, and link together even more families around the world.  These are realistic goals we can accomplish together.  And together we can help to relieve the suffering of these loving parents and children, and ultimately, help to save their lives. THIS IS THE FIRST TIME WE ARE ASKING FOR YOUR HELP! We have never sent out a request for funding before and hope that you understand our need. We are asking for love of our children.  We are asking you to please make a generous donation so that we can create and deliver better lifesaving programs and services to help the thousands of Moms and Dads who are so desperately reaching out to us for help. If you, or someone you know, has ever been helped by our organization... If you have ever received comfort and support from us when you needed it... If you have ever gained valuable, perhaps lifesaving information from our team... Then you know how important our work is. It is only by working together that we can find a cure for these seizures.  On behalf of thousands of loving parents from around the world, thank you for your tax-deductible donation. Click Here to Donate Now! Sincerely, Laura Cossolotto President and Mother of Michaela, 13 year old daughter with Dravet Syndrome P.S.  Please send us your updated contact info to receive our newsletters!  The International Dravet Epilepsy Action League is a 501(c)(3) nonprofit organization recognized by Internal Revenue Service - we are not affiliated with any other foundation.  P.O. Box 797 Deale, Maryland 20751 443.607.8267 www.IDEA-League.org