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My story starts with a chest cold. It had been going on for about a week, with congestion and slightly labored breathing. I had attended a morning breakfast meeting on Sunday, July 30,2013 for our High School reunion. Had a uneventful meeting and a selfie with an old friend of mine. The rest of the day was fine. Went to work on Monday, feeling just okay. Had a sandwich from a local Subway, was fine after that. Later on that Monday, started to have a case of nausea, and had heard there was a food born virus going around. The nausea went away when I got home in the early evening. About 1:30AM, i woke up with a bad headache, stiff neck, a temp of 102 degrees, full body sweats, and a massive headache. I was also vomiting and had a loose stool. took some Aspirin for the fever and went back to bed. Got up around 3AM and still had the same symptoms, but feeling worse. Took a cold shower for my sweats and went back to bed. Got back up and 6:30AM and called my boss to see if she could give me a ride to the ER. I got up to the ER, saw a Nurse, who had asked me about my symptoms. She took me right in to the ER, past Triage and into a room right away.
Once i gave my attending the same symptoms I gave the nurse, they started with a blood draw, came back and told me they found bacteria in my blood they did’t like. That instituted a spinal tap, and a trip to the CAT machine. I was then diagnosed in less than an hour, I was informed of my diagnosis, and that I was being admitted with Meningococcal Meningitis, stuck with IV’s full of steroids and heavy antibiotics. the last thing I remember in the OR was the nurse giving me a shot of dilaudid for my headache. I woke up 30 hours later in the Critical Care Unit, isolated from anyone not wearing protective clothing. I spent 8 days in CCU, and three weeks of home care. I completely was cured of the disease with no lasting effects. Early detection is crucial to surviving this. I even had my primary doc come in two weeks while I was visiting for a checkup, come in and say, “hey look! A survivor!


I never thought that going out with my friends on dinner adventures or working 40 hours a week as a registered nurse would somehow get me to almost lose my life. On December 9,2011 I was diagnosed with a severe form of bacterial meningitis called meningococcemia. Initially, I had flu like symptoms so I didn’t think it was anything serious. I tried to get some rest and sleep it off, but something or someone, told me to stay awake.

Then all of a sudden I couldn’t urinate despite drinking a lot of fluids and my bladder feeling full. I couldn’t feel my feet because they were suddenly extremely cold and numb. I stumbled as I walked and I became anxious and short of breathe within minutes. By the time I was in the ER I was unable to walk completely. The doctors and nurses couldn’t even take my blood pressure because it was too low. At this point all my major organs were failing rapidly. The doctors were insisting my mom call the rest of my family because they didn’t think I was going to make it. I was transferred to the ICU right away. According to the doctors, If I stayed at home 30 minutes more and fell asleep I would have died due to multi organ failure. I survived two heart attacks, a blood clot in my brain, kidney failure, and respiratory failure to name a few.

For 15 days I was in a medically induced coma while my body continued to deteriorate. I woke up Christmas Eve thinking it was the next day only sleeping 8 hours. The bacteria kept on spreading throughout my body causing blood clots to my extremities. This eventually made my limbs gangrenous in color because of lack of oxygen. I had a tattoo on my ankle that wasn’t even visible anymore because of the dark gangrene color. I was not able to talk for the first three months due to a tube helping me breathe lodged in my throat. Ventilators and other machines were helping me stay alive. I had dialysis machines attached to me because of my inability to produce urine. A feeding tube helped me eat, but it never provided the satisfaction of food in my stomach.

For 3 months I was unable to eat or drink through my mouth. Making my needs known was nearly impossible as well as very frustrating. There were so many times that I just wanted to give up. I had to spell on a board by pointing to the letters in order to communicate my needs and tell whether or not I was in pain, which was almost all the time. The pain I went through was unbelievable which made me highly tolerant after a while. Being poked with needles and having nerve pain was a daily routine. To make it worse I didn’t have a voice so I couldn’t scream or express my feelings. I woke up every single day terrified not knowing how much pain I would have, what the day would be like, or even if I would survive. The hardest part about being a patient is having the knowledge of a nurse. Realizing what kind of complications can arise and what the procedures were was frightening. Besides being physically uncomfortable, I found myself always psyching myself out thinking the worst possible scenario which was torture. I underwent over 20 surgeries during my 5 month stay in the ICU and every single time I feared for my life. I still have at least a few more surgeries to undergo.

Due to this debilitating illness, I suffered a great loss to my quality of life which is something we all take for granted. I lost all four limbs to this horrible bacteria. Physically and emotionally I was in a lot of pain. Autografts (skin grafts from my own body) were placed all over other parts of my body which made me feel hot due to the lack of natural pores for perspiration. My body feels like it’s 100 degrees all the time. The bacteria also affected my face and grafts were placed on my cheek. Due to this bacteria I physically lost my nose, top lip, my hair, some of my hearing in both ears, and part of my ear which through time grew back on its own. Mentally, I lost so much more. Reconstructive surgery plays a big part in my life now and has helped me stay optimistic. I always believed and trusted God in my life, but now more than ever. Everything happens for a reason and I believe God gave me this challenge because He knows I can handle it. I have been discharged home from the hospital and I am resting at home trying to heal. With the support of my family and friends I have been able to stay positive and not dwell in the past. It’s miracle I’m alive and I am very grateful because I do believe I am here on earth for a reason which is to inspire.


My name is Ashley Mason, and when I was just seven years old, I had Meningitis. I was living in Anderson, California, at the time. I was in second grade, going to school at Meadow Lane Elementary. One day at school I was sent home, due to a high temperature of 105. My mom took me to the emergency room, where the doctors simply said I had the flu and sent me home. I still had my fever, and when I woke up, wanting to lay with my mom, she told me to get up and walk to her, but I was too weak. She came and picked me up to lay with her. She looked me over to make sure I was okay, and that’s when she saw these marks all over me that looked a lot like bruises. She rushed me back to the emergency room, and the doctor on duty took me from my mother’s arms amd started working on me immediately. He knew exactly what I had. I was put into a drug enduced coma, because I was so small my body was in shock. I was then life flighted to UC Davis Hospital in Sacramento, California.

Shortly after that, I was transferred to Shriners Hospital for Children, where I spent three months learning to walk amd deal with my new condition. I lost four toes on my left foot along with half of my heel. I also had a below the knee amputation on my right leg. I have skin grafts coving my legs, arms and entire back. From then until now, I have still been having surgeries to fix my leg so I can walk without any pain. Just two years ago, I had a twelve hour surgery on my leg, during which a muscle was taken from my back to add more cushion on my leg, so it would be more comfortable to walk. Not only does it still hurt more than ever, at this moment it’s too difficult to walk, too much pain for me to handle. I also have back problems due to the surgery to fix my leg. I am in constant pain and am almost 20 years old. I got sick almost thirteen years ago, and I’m still trying to figure out how to deal with the effects of Meningitis.


It has taken me several weeks to pull myself together, to sit down and take a breath. I don’t imagine this will ever get easier or hurt any less. But I have to tell this story and hope that because of it, one less child will die from meningitis, meningococcemia, or any meningococcal disease.

I have always thought this saying to be true, “An ounce of prevention is worth a pound of cure.” Therefore, on the one-month anniversary of Phoenix’s death, the time has come to tell his story.

Phoenix is my beautiful, intelligent and amazing son. I want every parent to know that he was a precious child who was loved, cherished and cared for by his parents and his twin brother. In just a few days, I went from being a happy mother of two playful little boys to a grief-stricken mother trying to find meaning in such a tragic death. On the morning of February 9, 2012 ,Phoenix woke with a mild fever. He played with his brother, ate his breakfast, and then played some more. After eating lunch he laid down for his nap and around 2:00 P.M. woke up with vomiting and with diarrhea. Being the mother of twins, I am used to having both boys sick at the same time, so I thought it was a bit odd that Gryphon showed no signs of being sick at all. After getting Phoenix all cleaned up and settled down, I decided to check his temperature again. When I saw that it was now 104 degrees, I strapped him in the car and headed to the emergency room. As we arrived at the ER, I noticed a small spot on his arm. I couldn’t linger on this thought because things started moving pretty fast with the doctors and nurses checking his vital signs and asking me a lot of questions. I couldn’t keep my eyes off of Phoenix. I started to realize he was now acting very strange; it was like he was hallucinating. He seemed at peace and started to sing to me.

Nobody, not even the doctor, recognized his symptoms. The hospital staff had decided to just keep an eye on him and monitor his temperature. Phoenix asked me to take him to the bathroom, and while he was sitting on the toilet, he kept losing his balance and falling off. Immediately I knew something was wrong, so I started screaming for help. Several nurses came into the room, and at this time, the doctor decided to do a spinal tap. Even though it is such a painful procedure, my precious Phoenix didn’t move at all.

The doctor and staff called for the helicopter to transport him to Oakland Children’s Hospital. In the meantime, the results came back positive for meningitis. When my husband came into the room, Phoenix’s face lit up and he asked his baba for milk and cookies. He appeared to be responsive and cheerful and started to sing E-I-E-I-O. The anesthesiologist suggested we put him under to help eliminate any pain that he may be feeling. That was the last time we heard his sweet voice.

When the helicopter arrived, I demanded to be transported with him. As we were walking out to get in, the hospital chaplain walked with me. We stopped to pray for a miracle. It was at that moment I knew my baby was dying.

After a 50 minute helicopter ride, we arrived at the hospital. While they were getting him out, I could see that his tiny body was covered in purple splotches called petechiae; his legs, his arms, and his torso .Phoenix was raced to the ICU. Coming into the room, I could see at least four doctors and ten nurses scrubbed in and ready to go. I was asked by the head nurse to stay in the waiting room and was told they would brief me on his condition. Those were the longest two hours of my life. When she came back and told me Phoenix was the sickest boy in that hospital, I felt sick to my stomach. My husband had not yet made it to the hospital, so I stood there alone and in shock, trying to make sense of all that I was being told. As soon as my husband arrived with Phoenix’s twin brother, Gryphon, we were taken straight into the ER to make sure that Gryphon didn’t have the same thing as Phoenix. The decision was made to keep Gryphon under observation for the night until we could get a better grasp on what was happening with our baby son. The nurses came in periodically and updated us on Phoenix’s condition. I couldn’t bear being separated from either one of my boys.

I was so worn down that I couldn’t possibly process all the information that was being given to me. At times, I didn’t understand it, or maybe I simply didn’t want to believe it. I cuddled up to Gryphon and tried to fall asleep with him. Around 2:00 A.M. Gryphon started laughing in his sleep, sat up, hugged the air, and said, “I love you.” Little did I know that, at around the same time, Phoenix’s heart had stopped for 15 minutes. I didn’t know it then, but I know now that Phoenix had come to say goodbye to Gryphon. For the next three days, machines kept Phoenix’s little body alive. Then, we received the most devastating news we hoped never to hear: “Your son, at this moment, is the sickest boy in the whole world.” Phoenix was hooked up to countless IVs, lines, and machines, at least 15, going into his little body at one time. They also had him on an ECMO machine that was inserted into his arteries to help oxygenate the blood. He was so unstable to move that they could not do a CT scan on his brain because his heart had stopped, and his temperature had reached 106 degrees. They held off until Sunday evening to do the CT scans. From Friday to Sunday evening, we heard from the doctors, “Your son possibly has severe brain damage due to his high fevers, he has pneumonia, looks like we will have to amputate some toes and fingers, looks like we will have to amputate all four limbs.” It was shocking and horrible; it was hell. On Sunday evening, they were finally able to move him and did a CT scan. The scan confirmed there was no brain activity. Monday came, and the neurologist confirmed that he was, in fact, brain dead. Throughout this extremely long weekend, the chaplain of the hospital stayed close with us. Sister Breanice was an absolute saint, and through her words and kindness helped Bart and I become at peace with where Phoenix was about to go. She was right there as we watched the surgeon take the ECMO out of his body, and she was right there as Bart and I held his little hands and watched his strong heart slowly die. Our baby was pronounced dead around 1:00 P.M. on Monday, February 13.

Please pardon my anger and sadness when I express how devastating it was to read the article regarding Phoenix in the local newspapers, a simply put story regarding a nameless three year old who had contracted the meningococcal disease. There was no follow up to his condition, no call to action for parents to talk to their healthcare professionals, not even a note on what symptoms parents should look for in their own children. No one knows where Phoenix contracted this disease. What I know, after doing my own research, is that this disease is only carried by humans and is passed along in close contact situations: crowded areas, high schools, dormitories and even preschools! I also know that this disease has a high fatality rate in children and adolescents, and many who are lucky enough to survive usually don’t escape its devastation without the loss of a limb, some form of brain damage, hearing loss, or kidney failure . As a mother, I don’t understand how something like this can happen. That “something” being that any child in the United States could die from a disease that currently can be prevented by a vaccine. That is right: there are vaccines that help prevent the spread of disease and pointless deaths.

I am sure many of you have heard of polio, measles, mumps, and rubella, and how our society has done its best to eradicate these dangerous diseases. Every child that is born is required to get vaccinated at some point, and I am a parent who says, “That is great!” Why should our children die from a disease that can be prevented? How often do we hear of an outbreak of polio? Not often, or really ever. Thanks to vaccines.

I understand that there are many families who choose not to vaccinate. I respect your right to choose. However, I do vaccinate my children and expect to be given all of the necessary information to make an informed decision. Herein lies the problem: I was never made aware of the vaccinations available for meningitis. It is hard to believe that we currently have vaccines which protect against types A,C,Y and W135. One of the vaccines is approved for use in children as young as nine months of age. There are five different strains of bacteria that can cause meningococcal disease, and we can currently vaccinate against four of the five. The vaccine is offered to teenagers, college students, military personnel and other selected groups. Although this disease is known to have a high mortality rate in young children, for some reason, this is the age group not offered the vaccine.

I am lost. No, I am more than lost. I am angry and saddened that this disease can take the life a child, and no one seems to care. Why aren’t the younger children protected with a vaccine recommendation? Without any kind of public outcry, pleas of parents who have lost their most valuable treasures are going unheard. Our government needs to help protect our children and change the way our medical system works. Something has to be done but won’t be until we raise our voices loud enough to be heard. I didn’t want to be an advocate. I would much rather be holding my precious son in my arms, watching him play with his brother, tucking him in at night. I have to say that without the love and support from our friends and family, I am not sure my husband and I would have gotten through this. So, I must ask you, from one parent to another: wasn’t Phoenix’s life worth that ounce of prevention.


My son was 3 years old. Christian woke up with a fever. It took me a couple hours to get him back to sleep after giving him a fever reliever and a cool bath. I woke up a couple hours later with him still burning up. I was very worried and called his doctor and got him to be seen at eleven that morning.

I got him into to the doctor’s at eleven. The nurse that came in did not take his tempature, because she had left the thermometer in the other room. The doctor did his normal exam: looked in his ears, listened to his chest. He gave me some suppositories because Christian wasn’t holding anything down. His doctor told me that Christian would be better in a couple days, he told me my son just had a bug. I was more worried and questioned him but took him on his knowledge. When I got home and was making him soup, my daugher called me. Christian had pooped all over himself. As we were cleaning him up my daughter noticed the spots.

Later I found out it was the rash. It did not look like a rash to me, they looked like small bruises under the skin. I called the doctor’s office imediately and described what my son Christian was experiencing. The lady on the line told me the doctor was with a patient and she would have him call me back. I nervously waited. I tryed to wait patiently. After almost an hour went by with no phone call, I got back on the phone and told the woman on the line that my son was very sick, and if they did not see my son I was going to take him into the emergency room. They told me to bring him back in. It was 3 o’clock by then.

When I got back into the doctor’s office, within seconds an older doctor rushed over to me and took one look at Christian and told me I had a very sick boy. He took Christian out of my hands and rushed him in to one of the rooms. The last words I heard from my son were in that room. He was saying,”I want my mommy.” The doctors were displaying urgency. In moments there was an ambulance and they rushed my son to the nearest emergency room. I went with them. They rushed him into a room with all this equipment and started hooking up my son to wires. They put my son into an induced coma. They were working on getting him stabilized so they could transfer him to Children’s Hospital. They were waiting for the specialist to get there. I contacted my family and Christian’s father. We drove up to the hospital as Christian went in the ambulance. They took him up to the urgent care floor.

My son never got better; he died the next day, Friday, June 13th, 1997. I went home that afternoon without my son, my baby boy. It’s been 14 years since he was taken from me. “I want my mommy,” were his last words. I was right there and he did not see or hear me. He caught a bug and the bug got him. This was before they had the immunization for meningitis. My son would still be alive today if they did.


Friday, April 9, I was working in my garage. Suddenly I felt drained of energy. I got super cold. I was shivering and felt like I wanted to throw up . I thought I had food poisoning for sure. I went to the bathroom and forced myself to vomit, which I did very violently. I could not get warm.

At 2:00 AM I woke up gasping for air. It felt as if a five hundred pound gorilla was sitting on my chest. I knew something was seriously wrong; however I was not able to put my shoes on. I asked my wife to help me, and then she drove me to the emergency room. After tests for swine flu and pneumonia were negative, I was placed in I.C.U. The doctors did not know what was wrong with me. My breathing became weak and I was placed on a breathing machine. I was placed in a drug induced coma for 4 days. During these four days I had two surgeries. One surgery was for removing fluid from my lungs. The second was to remove fluid from around my heart. I also developed a high fever and was covered with ice packs. There were 4 tubes coming out of my chest and at least five IV tubes in my arms.

The doctors told me I was extremely lucky to not have had permanent damage. I did not lose my hands or feet. But I feel I cheated death this time and I am grateful for each day I have left. The Los Angeles Department of Health interviewed me where I had been the week before I caught this. A cough or a sneeze can do it.


My son was diagnosed with meningococcal meningitis in 1988 when he was 2 yrs old. The night before he was diagnosed we called the doctor to let him know that my son had a fever of 104; we were told to bring him to the office in the morning. When we saw the doctor in the morning, we were sent home with a diagnosis of high fever flu. No medications were sent home. By the afternoon, Josh’s blood vessels were bursting, he had negative blood pressure and he was in shock.

Thank God for the head physician at Sutter Memorial Hospital and the other doctors and nurses for saving my child. He had a 20% chance to live and he did. He was in intensive care for 2 weeks and in the hospital for 5. He had to go through Physical Therapy and wear leggings and only has a few scars to remind us all of this terrible experience.

Thank you for educating the public, physicians and other health care professionals about this terrible disease. That the flu can be more than just the flu. It is too bad the vaccine is only recommended for pre-teens and teens. This disease hit my son at age 2 and hit him hard. Like blood poisoning bursting his veins!