My heart is very heavy this morning over a Texas A & M  student who lived off campus dying with 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. www.meningitis-angels.org

   

Another Thanksgiving Without Ryan.
As we gather around the table with family, though amazing and joyful there is that never ending pain and miss that lurks beneath the surface. The pain that is in my heart, often hidden. That pain that wants to yell, Why isn't my Ryan here? Why is he not here with his cousins, a wife, a child or two? Why am I not called grandma like my sisters?

Then it all comes flooding back to me like a never ending river of pain. That vision of my only child dying on a steal table, stripped necked by a deadly vaccine preventable disease of all dignity, health and life.  The frustration of knowing it should not have happened. That Ryan could have been vaccinated.

So I fight back the tears, pass the cranberry sauce,yet another time and prepare for another battle in this continued fight to stop this deadly disease. Miss you baby boy, Mom

 A Gift For Baby Shawn

A member of my family after 5 miscarriages and at the age of 36 finally gave birth to a healthy baby boy.   As we prepared for the coming of the first baby in our family in 10 years with an elaborate baby shower for the mom to be. I found myself a little melancholy as it brought back memories of my own precious baby who would eventually die to a vaccine preventable form of meningitis. 

My baby, my only child, my son would have been 31 in September. My tears were mixed with joy and heartbreak.   We have read all the news about how many infants have died as a result of pertussis of late. We decided the best gift we all could give this precious little one was to make sure we are all vaccinated. So all of our family from the youngest to the oldest have made sure we are up to date on, or taken the vaccine to protect against deadly pertussis.   As we ate all that good Texas food, delighted ourselves on a selection of homemade cakes and celebrated the arrival of the most precious gift life has to offer, We made sure everyone who attended the shower was educated on the need to prevent pertussis from infants to adults.  Now not only does this new baby in our family have everything he needs for his comfort and to look most handsome he also has the beginning of good health and being protected from deadly disease.   

 I still stand amazed and some what frustrated, after 12 years of fighting to prevent meningitis that we still are seeing deaths and debilitations from this preventable disease. However we took a huge step forward in October when ACIP voted to add a new meningococcal booster at age 16 or 5 years after the first. The current recommendation is now for meningococcal vaccine at age 11 and a booster at age 16.  

We are also excited that there is a recommendation to vaccinate teens against pertussis. Those most teens may become really sick with pertussis (whooping cough) it is those infants at home who are not old enough for the vaccines and are dying from this disease.   Kudos ACIP.

I am in prayer today for several of my little Angels who are very ill. Their moms at their side.

Today as I thumbed through a little chest that held some precious mementoes of Mother’s Day past from my beautiful boy, Ryan, I was reminded that once again I will have to find my way through another Mother’s day filled with tears and unbearable lonliness. I will watch as my sisters and friends celebrate the day with their children and grand children. I will manage a smile that covers the pain in my heart.

I will remember the sweetness of my baby with his blanket and pillow in hand, crawling into my lap and telling me to sing Elvis mommy, the smell of a dirty little sweaty boy as he gave me flowers picked from the yard, the voice of a young man telling me ” the Bear loves the moma” following with “can I. I will remember my beautiful healthy boy laying on a table as life drained from his body as I prayed for God to do what was best for him. The most unselfish prayer a mom could pray because I knew it meant Ryan would shortly leave me.

I closed the little chest and walked outside to the garden we planted in Ryan’s memory. There in a little small patch growing were the little white mums he gave me the last Mother’s Day we had together. I smiled because you see they were almost dead when he gave them to me. He was so tight with his money. My sisters said that day, “He probably got them from a dumpster.” It did not matter. They were from him.

As I bent down and picked one, used it to wipe the tears from my cheek, I was reminded that because of what we do as Angel advocate moms, other moms will have children who will be protected from vaccine preventable diseases. Their children will continue to bloom and grow just like the little mums in Ryan’s garden. Even 12 years later a sign from Ryan he is forever with me. He just lives in Heaven Two years ago my own mom joined him due to HIB pneumonia, another vaccine preventable disease.

Think of us all this Sunday and whisper a prayer for us. Though our hearts are broken we stand strong and fight for your children another day. Forgive us when we act a little crazy or we hide out for a few days or we cry over what others view as happy occasions. Forgive us if we seem to ramble own about our children. You see it is the way we remind ourselves why we tell our stories even though the pain is sometimes more than anyone can imagine and each time kills another piece of who we are.

Stay strong my Angel moms together we will stop deadly vaccine preventable disease. Our children did not die or suffer in vain.

 

March 21. It is Sunday morning. My heart is so heavy. 6 children so far in this meningitis outbreak. All between the ages of 6-8.
Yesterday we went to the little town in Oklahoma where the outbreak is. It was like driving through an after war zone without a visible enemy. The destruction was not buildings but that of human life. There was no one on the streets, all the business were closed. It was as if the people of the little town had completely vanished.   We later visited a hospital where the third child of the six lay in ICU. His little body covered in gangrene from his face to his toes. He was unrecognizable form the little photo of the beautiful little boy which hung above his bed.  He was on a respirator and has less than a 25% of survival. I prayed with the mom and we both agreed as I had  prayed for Ryan in his final hours do what is best for my baby.   His mom is a child cancer survivor and has only the one child. She is in her 40s. She was told she would never have children. So this little child is already a miracle.   Later we went to the viewing of the first child to die. A beautiful little boy. This broke my heart.   We have not been able to touch base with the other families yet.   It is raining tears of grief on my heart. I am so angry.

The health department has yet to scheduel mass vaccinations in this little town. How many tears must we cry and how many must died before they listen?   We will begin work and communications with them to mandate vaccines for at least the adolescents in Oklahoma.  

The community is on spring break now but my fear is this deadly bacteria is still there.   Please keep all of us in your prayers. Mostly these families. Their battles have just begun and unless we can stop this deadly disease they as all of us will have lost the war.

 I am so sad to think that parents would refuse the meningococcal vaccine much less any vaccine. I am the mother of an only child, Ryan, who died from meningococcemia/meningitis. One simply has to walk around an old cemetery to understand the value of immunizations. I simply have to walk down the halls of my home to remember the pain of not immunizing. No parent should have to see their child’s name on a cold piece of granite in a cemetery, especially when it is preventable. No parent should have to have a child so debilitated that each day is a struggle to live and know that possibly one morning you could go into to wake them and they have died in their sleep due to sever seizures or organ failure cause from the meningitis several years before. Ryan was a beautiful, intelligent, young, healthy man. On Father’s Day 1998 he became ill with an earache and a fever. Within (14) hours he had blood coming from every orifice of his body and then he died!  The last words Ryan heard were, “Daddy loves you baby boy.” “The last words Ryan said were, I know.” With him went a huge part of our life. We will never be called mom and dad again, never be parents at a wedding, never hold a grandchild and we will not have his comfort in our old age when one of us loses the other. One of us will just be alone. Ryan had all of his vaccines that were required. I didn't know about the one not required, the one that could have prevented his death. I do now, too late. Ryan is just one of many infants, children and young adults who have died or have been left debilitated by vaccine preventable, pertussis, influenza, chicken pox,  pneumococcal and meningococcal disease. In my own life vaccine preventable diseases have affected my family over several generations. My grand father died from tetanus when my mom was only six, my mother's twin brother died at the age of 21 months from diphtheria, my sister almost died from chicken pox and had to be hospitalized, my mom died from HIB pneumonia and my only child died from meningococcal disease.I work with parents everyday through Angels whose children have been affected by both meningococcal and pneumococcal meningitis.  The outcome is almost always tragic, survive or not. If parents could only see some of our kids and hear our parents speak, I believe they would change their mine about vaccines. I have spent the years since Ryan died trying to educate on these deadly diseases and advocate for vaccines to prevent them because I believe all children should have the right to be protected from deadly diseases. We have to change the mind set that only college freshmen are at risk for meningococcal meningitis. It does not stop at the dorm room door. Infants, children, tweens and teen are at risk to. We must note pneumococcal disease, influenza and pertussis is still with us. We must realize that other vaccine preventable disease are resurfacing. Children have no voice or choice  but I believe if they did they would choose vaccine over deadly diseases. We all have to be that voice. The voice of reason, science, fact and proof. 
   

Today I find myself so frustrated. As I build this web site and write the pages, tell the stories, I  think why must we fight so hard to make sure the right thing is done. The vaccines come after many years of research and development. Then the work of getting the recommendations, then the laws to mandate so the life saving vaccines can be paid for so all kids have access to them not just a few whose parents are educated on the disease and the vaccines and can afford them.     In the mean time my heart screams because kids are still dying or being left debilitated by deadly disease. For years, I have fought to make sure kids are immunized against meningococcal meningitis. I fought for college freshmen to be immunized. But the time has come to save all kids from this deadly disease. Meningococcal disease does not stop at the dorm room door. My own son would have still died with this recommendation.  Infants teens and tweens are at risk. The recommendations must meet the FDA approval of the vaccines. The reasoning for not recommending vaccines for meningococcal disease because it only  prevents some strains of the disease is like saying to a sinking ship with a 100 people on board, we only have life rafts for 60 so there fore we are going to let you all go down with the ship.   We have one of the most amazing group of experts on our CDC/ACIP committee. They truly care and volunteer their time to serve and protect all from deadly vaccine preventable disease. I encourage them to keep up that work, the best in the world. I ask them to please make sure all children, all ages, have access to vaccines to save their lives.   No parent should have to bury their baby, toddler, child or teen from a vaccine preventable disease. No parent should have to watch as their child is chopped away bit by bit because of the gangrene caused from meningococcal or pneumococcal disease. No parent should have to worry that one morning they will go into wake up their child and because of seizures during the night, that child has died, years after their meningitis. No child should be seeing and hearing and the next day wake up blind and/or deaf because of meningitis.   I live this everyday. Not only through Ryan's death but the hundreds of families who make up Angels. How many tears must we cry and how many must die before they listen, before all realize that vaccine is not the enemy, that money is not the issue but life...