Warning: file_get_contents(userid.txt) [function.file-get-contents]: failed to open stream: No such file or directory in \\NAWINFS02\home\users\web\b977\rh.meningitis-angel\404.php on line 41 Wed, 04 Dec 2013 21:54:22 -0600WeeblyMon, 04 Nov 2013 13:13:03 GMThttp://meningitis-angels.org/1/post/2013/11/how-many-tears-must-we-cry-and-how-many-must-die-or-be-mutilated-before-they-listen.htmlYesterday was Halloween. Sadly, many of the children that survive meningococcal meningitis wear a mask of disfigurement every day. It is the face of destruction left by this vaccine preventable disease. They live everyday with stares, ugly comments, other children screaming or crying, and adults who turn away in disgust at the sight of them.
The once normal lives of infants, children and teens who survive meningococcal disease are often filled with personal insecurities, dependency on others just dress, eat, use the rest room or do all the other daily things that we all take for granted. This is for the rest of their lives. Sometimes they are bullied, yes bullied. Sometimes they die.
As I sat through the October 23 CDC/ACIP hearings and listened to the committee discuss and vote to only recommend the life saving vaccine for use in high risk infants, my heart along with other parents broke.
What determines high risk, we all had to ask ourselves? None of us had what was deemed high risk children, yet we all suffer. I sat there and in my mind, in my heart, I watch my only child, Ryan die a grueling death all over again.
As I stood, to testify, with little 10 year old Jeremiah, from Oklahoma, at my side, his head only reaching the level of my knees due to the loss of his legs, a little boy who can’t care for himself due to the loss of his arms and who suffers the rejection and constant issues from the loss of his face I discussed in this first paragraph I had to reach down to him and ask the committee is this “cost effective”.
The father of one of those infants, from North Carolina, testified how his only son, a once perfect little baby boy was left with the loss of both legs, both arms and over half of his face. Today, five years later his life is filled with pain, constant surgeries and the realization that he is not like nor will he ever be like other kids.
A mom from California who came to testify became physically ill during the discussions and was unable to testify about her perfectly healthy baby going from a fever to her arms and legs being amputated, her little face falling off on her ICU pillow and finally watching her sweet baby die after 40 days in a hospital ICU.
All of us who make up Meningitis Angels from across the country know from personal experience how debilitating and deadly this vaccine preventable disease can be.
We live in a time of concern about wasteful government and personal spending. I say any money spent to protect our children from deadly preventable disease is not a waste. It is the most cost effective way to protect our present and our future. If children had a voice whether or not to receive a vaccine or contract a deadly debilitating disease I believe they would chose vaccine. However they don’t. We have to be that voice of science, reason, care, love, and most of all protection of healthy life. One child, my child, your child lost, is one too many.
We must protect our ALL our children form deadly vaccine preventable disease. It is NOT cost effective to let even one child suffer or die from a preventable disease.
What you should know:
When a vaccine is recommended by the CDC/ACIP, it does not become mandatory. That is done on a state by state public health or legislative policy. However it,
· insures factual education on the disease and the vaccines to prevent it,
· Guarantees accessibility to all children and financial assistance to informed parents who desire to give it to their children.
]]>Fri, 05 Aug 2011 10:04:44 GMThttp://meningitis-angels.org/1/post/2011/08/national-immunization-month.htmlAugust is National Immunization Month in America and I am once again drawn back to a time when my fellow elementary classmates were lined up in the school gym or cafeteria and given our shots or our sugar cube with the polio vaccine. I think back before there were ACIP recommendations and/or mandates for middle school entry for adolescents for Varicella, Tdap, meningitis, HPV and other life saving vaccines. Mostly, I am drawn back to a time when my only child Ryan died from meningococcal meningitis long before these recommendations. Thus began my life long advocacy work to make sure all are protected from as many deadly debilitating disease necessary. We have made great strides in protecting our children form deadly vaccine preventable disease. The dedicated men and women of ACIP have worked hard to protect our kids. As organizations like Meningitis Angels, Every Child by Two, PKIDS, the Immunization Action Coalition, public heath departments and others partner together to insure all are educated on and protected from deadly diseases we find our work must not only continue but strengthen. We are at a great point in history. We are on the cusp of new vaccines to prevent meningococcal disease in infants. We must once again all stand together and make sure at the end of the day the vaccines are made accessible to the smallest and weakest of ours. We must stop this deadly disease that takes infant lives or leaves them debilitated. We must work for stronger education, recommendations , accessibility and research and development of new and better vaccines to stop disease not only in America but around the world. As parents shop for those back to school clothes to make their children look good, those school supplies to help them learn, I pray they will make the most important preparation, the one that will protect them form deadly diseases and make sure they are vaccinated. I also want to take a moment in this post to thank and congratulate Ms. Rosalyn Carter, Ms. Betty Bumpers and all of those at Every Child By Two for being leaders in this fight to save lives for over 20 years. You, Ms. Rosalyn and Ms. Bumpers are heroes. You wear big shoes for us to fill over the next 20 years. Frankie Milley Meningitis Angels, founder/national executive director Mom to Ryan, who died at age 18 from meningococcal disease.]]>Wed, 01 Jun 2011 13:21:23 GMThttp://meningitis-angels.org/1/post/2011/06/texas-passes-new-law.htmlTexas just became the first state in the country to immunize all first time college freshmen up to age 30 against meningococcal meningitis. A special gratitude to Angel Dad Greg Williams and his family for their work and leadership on this important law. There son Nicholas died under a law that only required those students living in dorms to be vaccinated. Angel Leslie, Angel Mom Joan and I had the honor to work on this important legislation with them. Meningitis does not stop at the dorm. Infants, children and teens are also at risk. Over the next months the CDC will be looking at this disease in infants and prevention. Learn more by visiting http://www.ProtecInfantsNow.org]]>Sat, 12 Feb 2011 05:26:29 GMThttp://meningitis-angels.org/1/post/2011/02/texas-a-m-student-dies.html My heart is very heavy this morning over a Texas A & M student who lived off campus and died from meningitis.
Last year when a Texas law was past that only required those students living on campus to be immunized over shadowed a law in existence since 2001. One we worked hard on.
This law required all college freshmen to be educated and most universities and junior colleges did so and required the student to read and sign a waiver of refusal. Some students did refuse and became ill but at least they were educated and had a choice.
Sadly, the new law does not give everyone that education or choice. The new law excludes approximately 75% of an at risk college freshmen population. Meningitis Does not Stop at the Doom. When my only child Ryan died, we had no laws and very little information. We help change that. However he would have still died under this law because he would have lived off campus when he started college on a date just a few months after his death. Instead he is buried with only a headstone to mark his life.
Within our national organization, 5 students who sought the vaccine and were told since they lived off campus they didn't need it, All DIED!!.2 are pictured here along with Ryan.
Please don't let your college student who lives off campus be blinded by this law. Make sure they are immunized. If your child's or your meningitis vaccine was taken more than 4-5 years ago speak to your health care provider about a booster. There are two vaccines now. They are Menveo and Menactra.
The law is not enough to stop the needless death and debilitation on college campuses. I call for immediate amendment to this law that would require all college freshmen to be immunized upon entry.
The light at the end of this tunnel is that Meningitis Angels led the advocacy and with our amazing Texas Health Department Immunization branch, Texas now requires all middle school students to be immunized upon entry and follow ACIP rules with a booster at 16 and again 5 years later. This will protect the in state college freshmen but not the out of state or the ones who are not educated on the disease and prevention.
Visit our site and educate yourself. ]]>Thu, 03 Feb 2011 04:39:41 GMThttp://meningitis-angels.org/1/post/2011/02/first-post.htmlThis is a place for Angels to post their thoughts and inquires. We will make every effort to keep it trash free. Please be respectful of others and report any thing inappropriate to email@example.com
Meningitis Angels excepts no responsibility for any post herein. Nothing herein is to be taken as medical advice. If you think you are someone you know has meningitis treat it as a 911 emergency.
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