We REFUSE To Be Ignored

I wanted to share with you all the public comment I submitted to the IACC. (Interagency Autism Coordinating Committee) Unfortunately, this lazy group doesn’t have a clue. We need to change that. I will be in their face at the next meeting held at the National Institute of Health. I plan on stepping it up a notch for the comment I will submit in person but, here’s what I have done so far.

………………………………………………………………………………………………………………………………………………………………………………………………………………………………

Dear IACC Committee Members,

My name is Nikki T****.  I am the Mother to 3 beautiful children ages 17, 12, & 11. I’m also previously a patient coordinator & currently Co-organizer of Autism Is Medical in Houston. I would like to share with you today my experience with how difficult it has been to receive appropriate medical care for my youngest daughter Olivia.

Shortly after Olivia was born she started to show development delays followed by loss of skills. My daughter’s healthy immune system quickly became overworked & unable to tolerate blow after blow. My Pediatricians best advice was to “wait and see if she catches up.”  Fast forward 11 years and we now have over a decade of personal experience with neglect & misdiagnosis. OVER & OVER.

My daughter has been denied the proper medical diagnostic workup by 27 specialists. She has had hospitals cancel medically necessary tests due to difficult behavior. She has been discharged from an ER with rectal bleeding without any answers, recommendations, future care plan or referral. She has truly been FAILED by the medical system countless times and because we trusted our physicians we NEVER knew. No amount of pleading for help by myself or my husband prompted a single one of these specialists to seek guidance or follow one of the many Standards of Care already in place for her specific medical symptoms. It was much easier to ignore her. Her quality of life or future was never once even considered. I often wonder why these guides are written in the first place or who is enforcing that they are being followed when appropriate.

Gastrointestinal Reflux Disease

Infection

Fevers

Cognitive Delay

Seizures

Chronic Constipation

Inflammation

Ataxia

Stomach & Muscle pain.

Hypotonia

Difficulty regulating body temperature.

Nutritional Deficiencies

Sleep Apnea

Immune Dysfunction

Food Allergies

Unexplained vomiting

Encephalopathy

Oxidative Stress

All damage induced by vaccine injury. All which caused “Autistic behavior.”

All which eventually led to her current diagnosis of a Mitochondrial Disorder.

I’m begging you to help our children receive the proper medical diagnostic workup and treatment they not only deserve but have the legal right to. The very popular “wait & see” approach DID NOT work 11 years ago and it certainly is still NOT working now.

Olivia was NOT “born this way.” I personally have been forced to swallow those words more times than I care to count. The majority of Olivia’s Autistic symptoms have slowly faded over the years. I believe with the appropriate medical treatment & Specialists by her side she CAN fully regain her once healthy body. I wish I could feel this confident about the rest of the Autism community that is still growing at an alarming rate and still being referred to psychiatry.

It is imperative that this committee understand Autism is Medical. Any time your body is not functioning properly there is a reason why.

At what point does this medical crisis that millions of our children face become an emergency?

At what point will the professionals be held accountable for their lack of knowledge or results?

In my opinion this committee’s accountability starts RIGHT NOW.

 

Respectfully, submitted on behalf of myself, my husband Marty, and children Samantha, Tanner, and most importantly Olivia.

Thank you,

Nikki T*****

……………………………………………………………………………………………………………………………………………………………………………………………………………………………..

 

It’s time to start calling people out.

I will NEVER let this go. This is not just about my daughter. It’s about ALL of them.  Every. Single. Last. One. Counts.

Travel plans are already confirmed. They better start preparing themselves now. I’m bringing one bad ass group and we refuse to be ignored.

I WILL NEVER BACK DOWN.


signature
DD Subscribe to Email 190x63
  • tiffani goff

    So are you saying the vaccine caused Olivia to develop Mitochondrial disorder or are you saying the vaccine caused the Autism which in turn affected her body so negatively it caused the Mitochondrial disorder? Not trying to be rude or question you, I am just interested in the reasoning behind Autism being a medical issue which in turn in associated with other medical conditions. I imagine there is a significant amount of autistic kids with other medical disorders, like Tiara, but how many? Are there more kids with physical manifestations than not? I wish you all the best of luck and please try to post more on the subject because we are all interested in learning more. xoxo tiffani

  • babyfoodsteps

    Amen Momma! Can’t wait to meet you in person!

  • Kerry

    If I were there IACC I would be AFARID, VERY AFARID!!!! You rock momma!!! Love this!!!

  • Kathy Wiessner Finnegan

    You go girl! I am glad all those that are affected have you as their voice! You are a force to be reckoned with and that is a good thing. :)