URGE CONGRESS TO PASS SHANNIES LAW

  • by: Deanna Miller Berry
  • recipient: Mandate every hospital in America and pediatricians offices to provide education materials to new parents on the signs and symptoms of Airway Defects and to SAVE the lives of children struggling to breathe every day.

THOUSANDS of children are dying everyday from breathing complications.  Airway Defects is commonly misdiagnosed as Asthma or Sleep Apenea.  It is NOT asthma, its an airway defect!

The only way we find out is if we empower new parents with the knowledge to know the signs and symptoms of this debilitating defect that have claimed the lives of thousands of children already.  How many more of our children have to die before we take a stand to help get the children the help they need before it's too late. 

TOGETHER, Please Help US ask legislation to pass Shannie's law where we promote National awareness for this condition. Does your child or do you know a child with asthma and the treatments aren't working? Does your child seem to be struggling to breathe during the night, where they turn blue and stop breathing? Does your child aspirate while eating? Does your child have noisy breathing (stridor) or their chest sinks in when they breathe? Then you would want to SUPPORT THIS Petition.

We are trying to save the lives of children Nationwide and spare families from the nightmare we had to endure just to get a diagnosis for our daughter. Let's take action today. Our children deserve to breathe! Help us SAVE A LIFE!

Help us push legislation to mandate every hospital in America and pediatricians offices to educate and provide inforamtion to new parents on the signs and symptoms of Airway Defects.  Early warnings could possibly prevent or SAVE a child's life.  Education is key!  Most of these parent's aren't even aware of what's going on with their child, and when they get to the hopsital, most hospitals don't even know what's going on with the child.  Time and money is wasted on treatments that either don't work or end up making the child worse.  Our theory of Airway Defects being the culprit to SIDS is currently being reviewed for possible probable cause.  IT's time we STAND and urge congress to pass Shannie's Law. IT IS OUR RIGHT TO BE INFORMED!

Date: _____/____/_____


Subject:  Cosponsor (Shannie's Law) The Airway Defect Awareness Act


Dear [your member of Congress or Senate]


I am writing to ask you for your support by cosponsoring the Airway Defect Awareness Act (Shannie's Law). We have sought out the help of US senators & Congressmen to support Shannie's Law, and have submitted this information to Washington.  This legislation would expand the effective exposure, research, diagnose, treatment, and reasources for an Airway Defect patient.  It will also ensure that preventaive measures are in place for all chidlren who are possibly living with and struggling to breathe every day, and the continued educating of both the medical professionals and their parent / caregiver (s) so that all those involved are prepared for what's to come, as each case is different.


This legislation will allow the following:



  • Awareness / Education to both Medical professionals (Pediatricians, ENT's, Speech therapists, RN's) and that these professionals be required to take a mandatory training on Airway Defects so that awareness is more vast than it is now.

  • Every infant born to a hospital or medical facility, make it mandatory for a nurse to provide education on Airway Defects signs and symptoms of their child.  No parent should have to wake up in the middle of the night to find their child blue and struggling to breathe.  Then to go to the hosptial to have no answers to help the child because of lack of education. This mandatory education (1hour) between the trained social worker who will also assist these families with a plan of ation for treatments, how and where to follow up, and setting them up with reasources that can and will assist these families financially should the condition worsenses.

  • That ALL children who test positive for Airway defects and other life threatning or medically complex (based on qualifications the physician classifies the child in) ages 0 - 21 issues be automaticaly qualified for State Health insurance MCO (Managed Care Organization) or Fee for Service plan. 

  • Children in the above named category will be allowed to be enrolled and approved (upon qualifying) for Medicad or State Health insurance plan that will enable the families to continue to take care of their families without having the financial strain of having to pay for medical expenses occured from medical bills they cannot afford. 


By supporting Shannie's Law, if we get to the culprit of why these children are struggling to breathe and have these tramatic things happen to them due to their health.  Shannie's Law will reduce inflation and the number of unnessesary claims and bills to the health insurance company over the course of the years, pain and suffering of the child, pain and suffering of those directly associated with the child's illness, families having to pay out of pocket for copays and deductibles on procedures that aren't helping their children get any better, or the pain / agony you will help save a Parent who woke up oin the middle of the night only to find out that she was robbed of her child lie a theif in the night after learning, her infant died "suddenly" throughout the night.  the medical examiners and physicians gave this a name SIDS (Sudden Infant Death Syndrome) when in fact it's name is Airway Defects.  We believe that Airway Defects is the cause of SIDS.  There has been little to no inforamtion available to families as to why thse children suddenly "die in their sleep."  The only way to rule that out is to Pass Shannies Law and allow us to continue to research, educate, and promote awareness for Airway Defects. 


Progress is already being made in efforts to promote Airway Defect Awareness, but we need more support to make sure that these children are given a fair chance to breathe. 


By our Sate and you supporting and Sponsoring Shannie's Law will cause the outcome of this law and teh programs implemented throught The Saving Shannie Foundation will ultimately be rewarding to know that not only are we educating, but we are researching, providing assistance to these families, and serve as a public good and save the govenment billions of dollars per year. 


I know there are a lot of priorities competing for the attention of Congress, however this is particulary important to not only me, but to members of the community, members of our family, members of our State, and most importantly members of your family.  It's NOT Asthma, it's Airway Defects.  Please send a response to dberry@savingshannie.com from your office on this matter and inform us on how you plan to help make a difference and save the lives of millions of children in America by just STANDING with Shannie's LAW! 


Thank you so much for your prompt attention in this matter as you can see the urgeny to expedite teh request to approve this law.


God bless America!


Humbly


[your name]

Update #27 years ago
We have updated our requests to Congress as cost could be a contributing factor in the screening of all infants, but a more cost effective measure would be to provide the education materials to the parents / caregivers of these children so they can be prepared for what's to come and to avoid delays as Airway Defects can be life threatening like our Shannie's.
Update #17 years ago
Everyone!!! Please sign this petition so that TOGETHER we can urge congress to enact Shannie's Law! We are so very grateful for all signatures so far, we are almost halfway there!! Please HELP US push Shannie's Law. To mandate that every hospital in America screen newborns (through an assessment - scale) for airway defects. Our children deserve to breathe. Can we COUNT ON YOU TO HELP.
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