Hello, my name is Autism.

"My Name is Autism"

By Omri Fiman/Marty Murphy





Hello. Allow me to introduce myself to you. My name is autism.

Perhaps you know me or know of me. I am a condition, a "disorder" that
affects many people. I strike at will, when and where I want. Unlike Downs Syndrome or other birth "defects", I leave no marks on those I strike. In fact, I pride myself on the ability to infiltrate a child's life, while leaving him or her strikingly handsome. Many people may not even know I am there. They blame the child for what I cause him or her to do. I am autism and I do as I please.

I am autism. I strike boys and girls. infants and toddlers. I find my
best victims to be boys around the age of 2, but any child will do. I like
children and they are always the true victims, though I take hostage the
others in the child's family as well. It is a bit like getting 2 for the
price of one. I affect one child and "infect" the entire family.

I am autism. I strike rich and poor alike. The rich combat me with
education and therapy. The poor shut their children away and cannot afford to fight me. I am able to win in the lives of poor children more than I am those of the wealthy, but I will try to take root anywhere.

I am autism. I am an equal opportunity disorder. I strike whites,
blacks, Mexicans, Ukrainians, Russians, Poles, Slavs, Japanese, Koreans and Fins. In fact, I strike everywhere on Earth. I know no geographical bounds. I am autism. I do not discriminate based upon religion either. I strike Jews and Christians, Muslims and Buddhists, Atheists and Agnostics.

I do not care what religion a person is or what beliefs he may hold. When I strike, there will be little time for any of that anyway. When they find
me, they will question everything they believe in, so why would I strike
only one group? I have affected followers of every religion on the planet.
I am autism and I am strong and getting stronger every year, every
month, every day, every minute and every second. I am concerned that money might be allotted to combat me and my takeover of children, but so far, I have little to fear. Some countries like Kuwait, are spending quite a bit of money to assist those who I have targeted and some, like the United States, would rather spend money on such ludicrous things as discovering the number of American Indians who practice Voodoo, as opposed to combating me. In an atmosphere such as that, I can flourish and wreck havoc at will.

In places such as that, I rub my hands with glee at the problems I can
cause to children, their families and to the society at large.

I am autism. When I come, I come to stay. I take the dreams and hopes
of families and trample them with delight. I see the fear and confusion in
the eyes of my victims and the see the formation of wrinkles, the worries
and pain on the face of their parents. I see the embarrassment their child
causes because of me and the parents unsuccessful attempt to hide their
child, and me. I see tears the parents cry and feel the tears of their
child. I am autism. I leave sorrow in my wake.

I am autism. I taketh away and give nothing but bewilderment and
loathing in return. I take speech and learning. I take socialization and
understanding. I take away "common sense" and, if I am allowed to flourish, I take away all but their physical life.

What I leave behind, is almost worse than death. I am autism. I fear nothing except courage, which I thankfully see little of. I fear those who take a stand against me and attempt to fight me and bring others into the fight as well. I fear those who try to make it safe and easier for my victims in the community, and their families. I fear those who push ahead, despite the fact that I am in tow. I fear the day I will be eradicated from the planet. Yet, I do not fear too much right now. There is no need. I am autism and I bet you know me or know of me. If you don't, you probably will soon. I am marching forward faster than I ever have before. I am looking for new children all the time. I am looking for new children to consume and new lives to destroy. I dread the day I will be looked upon
with pity or worse yet, understanding, for that day, is the day I will
begin to die.

But in the mean time I am safe, free to prowl onward. Free to cause the pain and suffering that I do so well. I am on a mission and have much work to do and thankfully no one is stopping me yet.

Hello. Allow me to introduce myself. My name is autism. Perhaps you know of me, if not don't worry, you will meet me soon....

Letter to Questcor

Please read the letter below. My friend and fellow IS Mommy has written this to the (CEO?) of Questcor. Recall that KC was saved from IS by ACTH, which now goes for $25,000 per vial. KC used at least four vials. Whe he was on it, the price was $2000 per vial. It is with a heavy heart that I say that after 9 months spasm free, Danielle's son Trevor is once again in the grips of IS, having hundreds of seizures per day. They are still waiting for the ACTH to come....


Mr. Bailey,


I did receive your recent email with the offer to speak about our journey since Trevor's diagnosis. I chose to take some time to think it over & to seek counsel from trusted friends. The feedback was mixed...as were my emotions. And in the end I never arrived at a peace point in my core. I did not mean to leave my answer hanging. I just wasn't ready to move forward one way or the other.


But during these ensuing weeks a conclusion has been drawn for me.


We had been seeing some questionable movements from Trevor. So mild even the doctors were not convinced. But I have learned to trust my instinct...and pushed for testing.


I spent every moment of this past week hoping with each beat of my heart that this time my instinct was wrong. That Trevor's Spasms had not returned. But...as I know you are already aware...a VEEG confirmed our worst nightmare. For the second time in his 17 months of life we are holding our broken baby boy. With shattered hearts. And unrestrained tears.


During the conference call with investors the evening of the JEC hearing you publicly shared that my testimony profoundly moved you. I have heard that you even played-back my testimony for your employees. Changes were promised. Changes that would help parents navigate through the pain of IS & gain access to your medication quickly. You celebrated Trevor's quick response as a success for your company.


But while you were busy proclaiming success we could not assume the same care-free feeling. We have lived each day since Trevor's diagnosis with the breath of the IS beast on our backs...just like every other family affected by this disease. Knowing that at any moment our son could fall prey to this devastating disorder again. The odds of 20-25% relapse mean very little to a parent whose child has already suffered a rare disease. And this week proved exactly why.


Allow me to share my second experience with your company...


September 8, 2008 - I received a phone call from a young man representing Questcor's Acthar Support & Assistance Program. The very first question (and frankly...only) was regarding gathering insurance information. There was no empathy. Not even a scripted "I'm sorry your family is going through this". It was all business. And that business was making sure our insurance (which is State Medicaid btw) would be footing the bill for Trevor's treatment. In fact, I received multiple phone calls making sure the correct ID numbers were given.

Late that afternoon he called to inform me that the case was still in the works.

And as of 3pm today September 9, 2008...we are yet in a holding pattern. I have not received any phone calls from Acthar yet today. Although our nurse called afraid that perhaps she had done something wrong to delay the process. I assured her that the process should not be so complicated that she would even have to entertain that thought! At this point I doubt we will receive Trevor's treatment by tomorrow? And even should it arrive tomorrow everything will still be delayed until Thursday because we need to make arraignments for a home nurse to be present. That will make it at least four days & 160 seizures from submission to injection.

Which leaves me with a very sour taste in my mouth. Similar to the taste I experienced about 8 months ago.

I am convinced we will never agree on the price point of ACTH. I readily admit my bias on the matter. And acknowledge that your experience on this issue undoubtedly exceeds mine. In fact, I can sooner converse in Swahili than understand the many complicated layers of this issue. And yet Providence has directed that we each have our horses in this race. Mine just happens to be a beautiful baby boy.

But there are certainly some areas outside of pricing with which I take issue...

I recently read a statement made by you stating that insurance denial is rare & that NORD is picking up the tab for the families who either do not have insurance or are denied coverage. Of course, again my objectivity is skewed by our personal battle with our insurance company during Trevor's initial diagnosis.


But if it is true...and if you are indeed committed to making sure that every child in need of ACTH will get it...than I am having trouble understanding why the first priority is ensuring that insurance will be covering the bill? I cannot wrap my mind around why...in a situation as dramatically tragic as IS...your company cannot find a way to ship the drug & work out the payment arrangements later? I have been told that other drug companies have done this. With drugs less vital than ACTH. And you have emphatically stated that insurance denial is rare & that no child will go without this drug due to Questcor's "generosity".

And so it seems to me the attitude at Questcor is: Payment arrangements first - vital drug to desperate child after.


Again...I'm feeling the need to wash the sour from my mouth.


You argue that if the drug were not priced where it is today the company would go under...and ACTH would no longer be an option. This of course is not my intent. My issue has never been with the drug...but rather with the pricing & accessibility. I know first-hand that ACTH can provide a miracle.


And Questcor investors were quick to point out - $25,000 to cure her kid & she's complaining!


Correction...that would be $25,000 PER vial & as I testified Trevor's course required 5. So in actuality the bill tallied to over $125,000 for the 8 months of seizure freedom Trevor was given. But he was not cured. And yes I am complaining. Or rather...advocating.


I am advocating on behalf of the IS community as a whole. I am advocating for all the beautiful baby boys & girls afflicted with this disease. And those yet to be diagnosed.

They deserve access to this medication. Immediate...affordable... access. A little over "two day" turn around for your company is too long for a family holding a seizure ridden baby.

I am imploring you...look into the eyes of my son.

His beautiful eyes. Eyes that represent every baby living with Infantile Spasms.


Look into Trevor's eyes & prove that you care. About him...more than the bottom line. (you can do this by going to www.trevorshope.blogspot.com)

Prove it by making the turn-around time less than 24 hours from submission of paperwork to receipt of the medication. Every time. Prove it by spending more than 13% of your company's profits to fund Research & Development. Invest more on finding a cure for Infantile Spasms than you do on employee wages. Prove it by under-writing projects like the Epilepsy Phenome-Genome Project which is in progress right now.

I have been told that you are a generous...kind-hearted...caring man.

Now I'm asking you to prove it.

From the heart of a mother...

danielle foltz

Believe in him with me....

It's Friday night and my son has just finished crying himself to sleep. I am still trying not to cry. Those of you who know KC's sleep habits know that he rarely cries himself to sleep, but things are different now. KC cries a lot. He screams when I drop him off at daycare. He cries when he wakes up in the morning. He cries himself to sleep, and he cries if I insist that he eat his yogurt somewhere other than the couch. He cries if I won't let him have more than three macaroni and cheese microwave dinners, because I am truly afraid that he is going to make himself sick by eating so much. And I cry because over the past month or so KC has changed in some significant ways that have led me (and others) to believe that KC is regressing into autism. Asberger's Syndrome, to be exact. I have always known that this was possible, even likely. Kids with seizures, especially IS have a much higher instance of autism than others. KC has been seizing almost daily lately. Kids with autism tend to have seizures more often so it kinda works both ways. KC has always had a few autistic tendencies, but in and of themselves they were not enough for a diagnosis, or even more than taking note. I always knew that there was something slightly different about him, but that could be said about many people. I also knew that if this was going to happen, it would likely happen near his 2nd birthday, if it hadn't already. I was just so hopeful that with all of KC's good luck that he would be ok. I wanted so badly for him to just be ok. And he will be ok, just not the way I had hoped. He has a lot going for him. He is verbal, social, and can make emotional connections. He will never be severely autistic, but to say that it will be mild might be over simplifying things. Many argue that there is no such thing as mild autism. But there is high functioning autism, specifically asberger's which is what I believe KC has. KC is extremely intelligent. He can count to 5, he knows the letter E, he knows a circle when he sees one, he can recite a few of his favorite books my memory, he remembers the tune to songs and can sing the tune. But he can't eat with a fork. He has days that he can barely walk with out falling. Lately he can't seem to stop tilting his head, and walking on his tippy toes. He is terrified of crib toys that move. He is my sweet, perfect, beautiful angle baby and right now I have that terrified feeling of wanting to scoop him into my arms and run far away from this. Of course I cannot do that, so I will once again gather the pieces of myself and do what I have to do to save my baby. I have begun researching the cassien free gluten free diet that seems to work wonders on some autistic kids. If all goes as planned, I'll start transitioning him right away. I'm going to research some things I can do at home regarding his behavior, and if need be I'll get early intervention in again. I don't even have to have him go through the official diagnosis process since he qualifies for services based on the IS. Of course he will have to eventually go through the official process, but it doesn't have to happen this second. I may take him in for an EEG, just because he seems to be seizing more and more. I'm going to research DAN doctors (defeat autism now) and see what I need to do to learn about chelation therapy and ABA therapy. And I'm going to try to keep myself together even though I feel like my world is falling apart again. Please pray for my baby. He's such a good boy, so sweet and so loving. I believe in my heart that his spirit will break through anything that he comes up against...I really do believe that. Believe in him with me, and believe that once again KC will defy the odds and will rise above whatever comes his way.

Just thought you might like to know...

After a few emails back and forth, this is part of my response to someone whom I love dearly who likes to play "devil's advocate" with me on the vaccine issue. Some of you might be suprised at my feelings on this subject, but this is truly how I feel.


... Not for the point of arguing, but so you can understand why I cannot stop defending my position on this. This is not just "some cause" for me. This is about my child. IF KC never had IS, I can guarantee you that I would not have the views or knowledge that I do about vaccines. I wish I didn't have to argue this. I wish I was blissfully ignorant like most parents, but I don't have that option. I watched my son go through hell, and then learned that way to many other families have had the same experience, and I just cannot go backwards now. Unfortunately, most people who fight for this particular cause have experienced the horror of vaccinating their child, and watching them change. Weather it be seizing like KC, regressing into autism, or becoming permanently disabled, It's not like we pick and choose a cause or two out of a hat and say, well I think I'll fight for this. It's not like that. At least not with this. If that was the case I would take my choice and put it back in the hat and forget I ever heard the words "vaccine safety." But I can't do that, so I do what I can to share what I know with the people who want to hear it. But please don't ever think I chose this over what some might view as a more important cause. I'm just a mom who held down her screaming six month old baby so he could be given routine vaccines, and ended up with a living, breathing, nightmare. This is the only way I can find it in myself to live with what happened. I mean it when I say this...please forgive me for being less than kind in my response to you. My intention is never to offend, irritate, or hurt you. I am simply trying to deal with my own pain and move on in the only way I know how.

Karen

Heartbreak and Hope

Please take a few moments out of your day and watch this video. It was made by Angela Utely. For those of you who are already educating before you vaccinate, this will just reaffirm all of your dedication and hard work. For those of you who are scared...be scared not to look. I'm not saying don't vaccinate. Vaccinate, but EDUCATE before you do! The faces of children on this video are just a handful of the thousands who were at the green our vaccines rally. The second song in this video is the song that was playing as we all held up pictures of our vaccine injured children in Washington. I sobbed my heart out, and every seizure, every hospital visit, every time I had to hold KC down for tests as he screamed, every second of the months and months that I had to wonder if he would make it, and what his quality of life would be, flashed before my eyes in those few moments. This didn't have to happen to KC. If you think that what I went through was frightening, and don't want to see anyone else go through it, then watch.
And check out Angela's site which is listed below(www. myspace. com/preventvaccineinjury) It is nothing short of amazing. Educate yourself. Listen to your heart, always.


Love Karen