Parents Testify in CDC Hearings
CDC “Not Cost Effective!” Parents say, “One child debilitated or dead is one too many. “
Houston October 20, 2013
Earlier this year, the FDA extended usage of a current meningococcal vaccine that provides infants with coverage against deadly meningococcal disease caused by 4 out of 5 serogroups (A,C,Y and W-135). According to experts, here are some facts to consider:
On (October 23) the CDC/ACIP committee will decide whether or not to recommend the life saving vaccine for use in infants.
Several parents and infant/child survivors from across the country including Frankie Milley of Houston, who lost her only child, Ryan to the disease will attend and testify in those CDC/ACIP hearings in Atlanta Georgia.
Milley said, “Each one of us knows from personal experience how debilitating and deadly this disease can be.”
Two of the parents attending have children that lost limbs and faces from the disease. One’s daughter had to have a kidney transplant. Three of the parents’ watch their children die a grueling death from the disease.
One mom said’ “I watched my perfectly healthy baby go from fever to her arms and legs being amputated, her little face falling off on her ICU pillow and finally watched her die.”
The once normal lives of infants, children and teens who survive meningococcal disease are often filled with constant stares, 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.
They sometimes suffer,
The cost for special educational needs and lifelong medical care is astronomical to the family and our government health care system.
Milley said, “We must protect 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,
Milley said, “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”
For more information on meningitis visit www.CDC.gov or www.meningitis-angels.org
Houston October 20, 2013
Earlier this year, the FDA extended usage of a current meningococcal vaccine that provides infants with coverage against deadly meningococcal disease caused by 4 out of 5 serogroups (A,C,Y and W-135). According to experts, here are some facts to consider:
- Approximately 35% of meningococcal disease in the US occurs in infants; babies younger than 7 months old are the most vulnerable.
- In their first year of life, infants are more than seven times more likely to contract the disease than those ages 14 to 24. Yes, that is right more than college freshmen living in dorms.
- Of the infants who contract the disease, more than 10 percent will die from it and of those who do survive; approximately one in every five will suffer permanent, devastating side effects, including amputations, hearing loss, paralysis and brain damage.
- Each year, more children in the US die or are left with permanent disability from meningococcal disease than from two other diseases combined that we routinely vaccinate infants against - rotavirus and varicella.
On (October 23) the CDC/ACIP committee will decide whether or not to recommend the life saving vaccine for use in infants.
Several parents and infant/child survivors from across the country including Frankie Milley of Houston, who lost her only child, Ryan to the disease will attend and testify in those CDC/ACIP hearings in Atlanta Georgia.
Milley said, “Each one of us knows from personal experience how debilitating and deadly this disease can be.”
Two of the parents attending have children that lost limbs and faces from the disease. One’s daughter had to have a kidney transplant. Three of the parents’ watch their children die a grueling death from the disease.
One mom said’ “I watched my perfectly healthy baby go from fever to her arms and legs being amputated, her little face falling off on her ICU pillow and finally watched her die.”
The once normal lives of infants, children and teens who survive meningococcal disease are often filled with constant stares, 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.
They sometimes suffer,
- severe organ damage,
- digestive, blood, emotional and seizure disorders,
- loss of limbs and faces with ongoing reconstructive surgeries,
The cost for special educational needs and lifelong medical care is astronomical to the family and our government health care system.
Milley said, “We must protect 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.
Milley said, “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”
For more information on meningitis visit www.CDC.gov or www.meningitis-angels.org
Angel Dads on Meningitis and Vaccines
HOUSTON, June 19, 2011
This Father's Day is a special day for Angels Dads on Meningitis (ADOM). Angel dads from across the country came together in Denver, Colorado to launch a national campaign on meningitis awareness.
Meningitis Angels (MA) was founded in memory of Ryan Milley who became ill on Father's Day 1998 and died the next morning. Bob Milley said, "Ryan was our only child, he should not have died. A vaccine could have saved his life. Each day without my son seems like an eternity. For the first time in many years, with the launch of this awareness campaign, Father's Day seems bearable."
The dads all have one common goal to make sure other fathers do not have to suffer the pain of losing a child or see their child struggle just to live day to day.
Bacterial meningitis is a very serious disease which can lead to blindness, loss of limbs, paralysis, organ failure, severe seizure disorders and skin scaring, learning disabilities, deafness, brain damage and death.
Those dealing with the aftermath of bacterial meningitis often face the breakup of families, job loss, serious economic hardships, social seclusion, depression and more.
Angel dad, Jody Meigs donated a kidney for his daughter Leslie who suffered kidney failure as a result of her meningitis. He said, "Giving a kidney to my child to save her life was a gift of love. I would give my life for my children. However this could have been prevented."
There are 3 vaccine preventable forms of meningitis, Pneumococcal, Hib, and Meningococcal. In the US, pneumococcal and Hib vaccines are routinely recommended by the CDC for infants. In the last 10 months CDC updated recommendations for meningococcal meningitis vaccination of children ages (11) years, teens age 16 and all those students upon college entry.
Frankie Milley, (Milley) MA founder and national executive director said, "On June 22, I will be in Atlanta as the Advisory Committee on Immunization Practices (ACIP) discusses recommending meningitis vaccines for high-risk infants, as young as 9 months old. How fitting, that I will stand before ACIP on the 13th anniversary of my son Ryan's death and comment on the very disease that took his life. Our country has made great strides with prevention of all three of these deadly forms of meningitis. However, meningococcal disease remains one of the most deadly vaccine-preventable diseases. We often think of this form of meningitis as a college dorm disease. Meningitis does not stop at the dorm room door. We saw that with the death of Sierra Krizman in Colorado, Jane Menard in Louisiana and just this year with Nicolas Williams who died while attending Texas A&M." Angel dad, Greg Williams led the fight for a new Texas law which requires all first time college students to be immunized. Williams said, "My son should not have died. We should have known he was still at risk even though he lived off campus. As a father, I had to make sure we work to protect all of our kids."
Milley said, "Now is an extremely important moment in the fight against meningococcal disease. With the recent FDA approval of a vaccine for children as young as 9 months old, and more vaccines for children as young as 2 months being considered for approval – as well as a Group B meningococcal vaccine in the pipeline – our 13-year fight to eliminate this horrendous disease in the U.S. will hopefully soon end in victory."
Angel dad Chris Boone, whose infant son Ethan was left with the loss of all four extremities and most of his face from meningococcemia said, "It broke my heart when Ethan saw his little sister with new shoes and asked, Daddy why don't I have shoes?"
Milley is participating as a national stakeholder and attending four regional meetings hosted by the CDC, the first which was held in Concord, New Hampshire. With Angel mom Yecenia Manzano who lost her infant daughter Bella, at her side, they will join other Angel families at three more. Those will be in Seattle, Washington on July 12, Chicago, Illinois July 21 and Denver, Colorado on July 25. Angel dads JP Stanton, dad to Mary, Jeff Knutter, dad to Alex, John Kriszman, dad to Sierra and Steve Anderson, dad to Phoenix, all who lost children from meningitis, will be participating with their voices as these meetings come to their home towns.
For more information on meningitis, visit www.CDC.gov.comor www.Meningitis-Angels.org.
To request an interview with an Angel dad in your city, contact us at www.Meningitis-Angels.org.
Join our Facebook cause at http://www.causes.com/causes/103719
This Father's Day is a special day for Angels Dads on Meningitis (ADOM). Angel dads from across the country came together in Denver, Colorado to launch a national campaign on meningitis awareness.
Meningitis Angels (MA) was founded in memory of Ryan Milley who became ill on Father's Day 1998 and died the next morning. Bob Milley said, "Ryan was our only child, he should not have died. A vaccine could have saved his life. Each day without my son seems like an eternity. For the first time in many years, with the launch of this awareness campaign, Father's Day seems bearable."
The dads all have one common goal to make sure other fathers do not have to suffer the pain of losing a child or see their child struggle just to live day to day.
Bacterial meningitis is a very serious disease which can lead to blindness, loss of limbs, paralysis, organ failure, severe seizure disorders and skin scaring, learning disabilities, deafness, brain damage and death.
Those dealing with the aftermath of bacterial meningitis often face the breakup of families, job loss, serious economic hardships, social seclusion, depression and more.
Angel dad, Jody Meigs donated a kidney for his daughter Leslie who suffered kidney failure as a result of her meningitis. He said, "Giving a kidney to my child to save her life was a gift of love. I would give my life for my children. However this could have been prevented."
There are 3 vaccine preventable forms of meningitis, Pneumococcal, Hib, and Meningococcal. In the US, pneumococcal and Hib vaccines are routinely recommended by the CDC for infants. In the last 10 months CDC updated recommendations for meningococcal meningitis vaccination of children ages (11) years, teens age 16 and all those students upon college entry.
Frankie Milley, (Milley) MA founder and national executive director said, "On June 22, I will be in Atlanta as the Advisory Committee on Immunization Practices (ACIP) discusses recommending meningitis vaccines for high-risk infants, as young as 9 months old. How fitting, that I will stand before ACIP on the 13th anniversary of my son Ryan's death and comment on the very disease that took his life. Our country has made great strides with prevention of all three of these deadly forms of meningitis. However, meningococcal disease remains one of the most deadly vaccine-preventable diseases. We often think of this form of meningitis as a college dorm disease. Meningitis does not stop at the dorm room door. We saw that with the death of Sierra Krizman in Colorado, Jane Menard in Louisiana and just this year with Nicolas Williams who died while attending Texas A&M." Angel dad, Greg Williams led the fight for a new Texas law which requires all first time college students to be immunized. Williams said, "My son should not have died. We should have known he was still at risk even though he lived off campus. As a father, I had to make sure we work to protect all of our kids."
Milley said, "Now is an extremely important moment in the fight against meningococcal disease. With the recent FDA approval of a vaccine for children as young as 9 months old, and more vaccines for children as young as 2 months being considered for approval – as well as a Group B meningococcal vaccine in the pipeline – our 13-year fight to eliminate this horrendous disease in the U.S. will hopefully soon end in victory."
Angel dad Chris Boone, whose infant son Ethan was left with the loss of all four extremities and most of his face from meningococcemia said, "It broke my heart when Ethan saw his little sister with new shoes and asked, Daddy why don't I have shoes?"
Milley is participating as a national stakeholder and attending four regional meetings hosted by the CDC, the first which was held in Concord, New Hampshire. With Angel mom Yecenia Manzano who lost her infant daughter Bella, at her side, they will join other Angel families at three more. Those will be in Seattle, Washington on July 12, Chicago, Illinois July 21 and Denver, Colorado on July 25. Angel dads JP Stanton, dad to Mary, Jeff Knutter, dad to Alex, John Kriszman, dad to Sierra and Steve Anderson, dad to Phoenix, all who lost children from meningitis, will be participating with their voices as these meetings come to their home towns.
For more information on meningitis, visit www.CDC.gov.comor www.Meningitis-Angels.org.
To request an interview with an Angel dad in your city, contact us at www.Meningitis-Angels.org.
Join our Facebook cause at http://www.causes.com/causes/103719