How I Found Angels and What It Means To Me.

(Angels and family members share  how they found Angels and what it means to be a part of the Angel Family.)

 

Beary Wise gives Christopher Senyk a hug at the annual Walk-A-Thon held in memory of his baby sister, Alexa.

Dan Mason, I was doing a general search one day about Meningitis. I found this support group while searching. it has meant so much to know that there is a organization that does so much to educate those about  meningitis and its effects. I being a survivor am proud and honored to be a member of such a great organization.

 

Kathleen "Kate" Wynn, My story is slightly different.  I didn't find Meningitis Angels, Frankie Milley found me.  My daughter Carye was in the Pediatric ICU, in the 3rd day since she became sick.  She was on life support and in renal failure.  I was in the parents waiting room, while they were attending to the dialysis machine, this was around 1 a.m.  The phone rang, and on the other end of the line was a very southern woman, asking for me.  She explained that she had heard about my daughter and wanted to know if she could help, since she had lost her son Ryan to the disease.  Well I was having a slight meltdown, since things were not going so well at that moment.  No one knew how I felt except for her and she let me know I was not alone.  Frankie was my "Angel" and she talked to me until I was calm.  We've been talking ever since.  We've never really figured out how she got the number to the pay phone, but God knew we needed her. I thank Him everyday for getting her that number.  My daughter Carye is an EBA, and also a Vaccinator. She speaks in school and this August will be part of the National American Miss pageant, her platform is Meningitis and Vaccination education. I am a Host for parents of Earth Bound Angels Chat.   Meningitis Angels is a Lifeline for us and inspires us to extend ourselves to others in the same way that Frankie did with me. Meningitis Angels has become a part of our everyday lives.  

 

Linda Dahlstrom, I first learned of Meningitis Angels about a year or so ago when I was searching online to find others like me who lost children to this
killer.

My son, Gabriel Lind Anderson, died on July 7, 2005. He was 7 months
and 4 days old. He died within 12 hours of the first sign that
anything was wrong - and about 8 hours after the emergency room doctor
mistakenly told us he merely had the flu and sent us home. When he
seemed worse later, my husband and I took him back to the hospital
where, too late, doctors diagnosed him with Neisseria Meningitis. He
died only hours later while a doctor worked in vain to restart his
heart as we stroked his little head and whispered in his ear how much
we loved him. We sang him to heaven's gates.

Phoenix's death catapulted us to a place outside ourselves where
everything we thought we knew was called into question and a into a
world that no longer made any sense. Raw with grief in those awful
days and months that followed, I tried to understand how a disease I
barely knew of could have stolen my child so quickly and how a doctor
in a well-respected hospital in the United States could have
misdiagnosed it. Did I miss something? Was I a bad mother? Was there
anything I could have done?

A friend who lives in Italy told us that the word for meningitis in
her country translates to lightening because of its swiftness and
deadliness. We had indeed been struck by lightening. I needed to find
other families who had as well, to see how they survived what feels at
first un-survivable.

I found Frankie's site, with the story of her beautiful son Ryan and
the tributes to others. In the stories of those angels, I found
solace. I was not alone. Too many others had similar stories. It was
bittersweet to read how many other cases of meningitis had been
mistaken for the flu as well. It wasn't just our family. Through the
words on the site and Frankie's everlasting love for her son and
others, I felt embraced.

Phoenix was full of love and light and hope during his time with us on
earth. As his mother, I refuse to let his death destroy me. His legacy
through me must be one of hope, compassion, strength, love and yes,
even joy. He deserves nothing less. In the space where my heart has
cracked wide open, there is more room for love. I would never have
chosen to learn these lesson, but there they are. We can help stop
meningitis. Too many children and young adults have still to get the
vaccination. Even as I type this, a vaccination for babies, developed
by the Gates Foundation, is being tested in Africa and will hopefully
be approved by the FDA by 2009. That vaccination could have saved my
son if it was available.

I am so proud to be Phoenix's mother. One day, when God calls me, I
will see my son again. But in the meantime, we all have work to do. We
have other bereaved families to embrace and walk with - and we have
education to do so that everyone possible will get the vaccination.
Together, we can do anything.

Linda Dahlstrom Anderson, Seattle, Wash.
Mother to Phoenix in heaven and Gabriel on earth
"Death is not the final word. Love is the final word." - Rev. Cathryn
Cummings-Bond at Phoenix Anderson's memorial service.

 
Sean Anthony Cononie EBA, In 2003 when I almost died from Bacterial Meningitis  I reviewed all about meningitis on the Internet and then ran in to Meningitis Angels. I read all about their efforts and saw  that many people did not make it.   I then wanted to help them so I contacted Frankie and offered help financially.    Every so often I go to their web site and read about all the people that did not make it and then I pray for them and their families.

 

Margot J. Fucich, Finding Meningitis Angels & Frankie Milley has been a great blessing in my shattered life. Frankie responded to my email immediately & has been a strong shoulder ever since. I had the honor of going to Los Angeles last September to meet her at the Patient Advocacy Leadership Conference even though we live only 60 miles apart here in Texas. Through Meningitis Angels I have come to understand exactly what killed my 20 year old son Trent while away at Loyola University. Frankie Milley & Meningitis Angels are trying to prevent other families from having to endure the pain that many of us have been through. Education, Legislation & Vaccination can save many lives.

Thank you Frankie for all you do. 

 

Lacey Harris-Willoby, I found Meningitis-Angels after my 3yr old son, Landan Harris passed away from meningococcal meningitis on 11/16/06. I started searching for information on meningitis because I didn't understand what could take a life so quickly and without notice. Finding Meningitis-Angels has been a blessing for me because it offers information and support when you've lost a child or loved one. I'm looking forward to getting more involved in meningitis awareness in memory of my son.

 

Yolanda Wilson,In September of 1963, I was diagnosed with Neisseria Bacterial Meningitis with Septicemia. At the time of my diagnosis, my mother was told I had 3 hours to live. I was 6 at the time and did not have a clue what was going on. I am now 49 and still kicking but not very high. I have had many problems through the years and could not find any place on the internet where others may have the same problems I was having. The CDC told me they had not collected info on persons of my age regarding problems they had encountered through the years. I went looking for a place where I could talk to people who had gone through this disease. I found Meningitis Angels! I have been on the site every since. Frankie and all the Angels have gone through the heartbreak and path of destruction this disease causes. I feel at home on this site and hope I can help others as much as they have all helped me. I will be on this bandwagon as long as I can because some how, some way, we need to stop this disease and its destruction. This site has meant the world to me. It has brought hope and healing to me. Thank you,

 
Lindsey Nicole Gray, I found Meningitis Angels a few months after my initial hospital stay.  I wanted to learn more about meningitis so I did an internet search.  I was glad I found Angels b/c not only was I able to learn more about the disease that I'd had, but I was also able to find a group of people who really could say they knew how I felt and what I was going through b/c they'd all been touched by meningitis somehow too.  After reading all the stories from the other angels that were posted on the site, I decided I wanted to get involved in preventing other families from going through what mine had.  I began speaking to high school and college students about how the disease is contracted and on getting vaccinated.  I've been on almost all of the local news channels in Memphis, in the Commercial Appeal, which is Memphis's BIG newspaper, and also in some of the other local newspapers.  Also, thanks to Meningitis Angels, I was given the opportunity to have my story featured in Seventeen Magazine.  Anytime I start to feel down about all of my medical issues, it gives me some comfort to know that I can get online and send an email to someone who knows and understands my frustrations.  It's just nice to know that I'm not alone in this!

 
Pam  van Brakle, I found Meningitis-Angels while searching the internet after Justin died.  I was looking for information regarding this terrible disease.  I was looking for answers and found some amount of comfort talking with others who had experienced the same.

 
Dee Werner, After Becky died, I did lots of searches on the internet on meningitis and found Meningitis Angels.  I emailed Frankie and sent my story to her and Frankie did an awesome job honoring my daughter, which is what we needed at the time and still need today . . . some way for people to never forget who she was!!   Because of Frankie's faith I was drawn in even more!  Though it is a very sad sight, we send people to Meningitis Angels all the time because it also has a very important message to tell.  Keep up the good work, Frankie.  We are proud to be associated with Meningitis Angels!

 

Joi Schrette, Dear Frankie, Shortly after Rachel died of Meningitis, I did a search on the internet to get more information on this disease.  I came across the Meningitis Angels website and read the stories of other families affected by this horrible disease.  Reading other Angel stories was so heartbreaking that it literally knocked me right out of my chair!  It took a couple of months for me to have the courage to go back to the website and, eventually, to write Rachel's own story.  Rereading the Angel's stories, especially Ryan's, gave me hope and encouragement to face my future without Rachel.  Frankie, you showed me that you can not only survive such a tremendous loss but actually create something positive from it.  Thank you Frankie and  the Angel team for all of your love and support.  It has made a tremendous impact on our lives. With love,

 

Dawn Thibodeaux, I never thought I would be part of a family such as this. When I lost my sister, Jane at the age of 22 to bacterial meningitis, I felt like I lost a part of myself.  My dad did some searching on the internet in search of some answers and he came upon the Angels website, then passed it on to our family. Since Jane has gone to be with all the other Angels, I have tried to help in any way I can because awareness is everything.

I teach Kindergarten and for the past 2 years, I have hosted a Change for Angels Drive at our Elementary school in memory of Jane. Along with the change collected, I pass out the Angels brochures to each child in our school. With knowledge anything is possible. Education is everything.

I have also passed out brochures/fliers to people after church within our community every April for Meningitis Awareness Month. My hope is that families become aware and take measures to prevent themselves and our future. Sister to HBA-Jane Menard

 
Christi Wears, When my daughter Leiloni was diagnosed with Crytococcal Meningitis I was told that she was blind and had very little chance of living. I scoured the internet looking for answers.  I found the Meningitis Angels website and began reading the stories the first story was Frankie's I was so touched.  Feeling alone and terrified I wrote a quick email to Frankie. By the very next morning Frankie had emailed me back and had created a  page for Leiloni.  I began to receive emails from Earth Bound Angels and their families, they prayed for us and gave so much support and information.  I suddenly felt that I was not alone in this fight.  I felt that I had gained a new and wonderful family. When Leiloni began to recover after being in Neuro Intensive Care for 29 days still blind and having a VP shunt placed in her head-The prison wanted to take her back!!!!! I was freaking out, I contacted Frankie, she put me in touch with Sean Arcone, the fight of a lifetime began, all of the Angels and their families join forces with me, the outpouring of support and letters to the Parole board was overwhelming.  It took two months but together we forced them to release her!!!!!!! There are not words to explain the way I feel about Frankie and the Angel family except for Great Love Appreciation and Gratitude!! They are strong compassionate Survivors and I feel that I owe my life and my daughters to them!! We Love you with all of our hearts. Christi Wears mother to EBA Leiloni Popoalii EBA 

 
Angela M. Satterthwaite, I found Meningitis Angels a few years ago when I was trying to find a support group over the loss of my child and boy did I ever find one! MA has come to mean the world to me. It is a place that I know I can go to and talk and know that people know exactly how I feel. MA was the best thing that ever happened to me concerning my daughter. 

 
 Robin Kephart,My 1st born son Gregory got meningitis at 6 mos. and I was looking to find answers to meningitis and it’s after effect.  Looking for hope that Gregory will pull through this 100% in spite of the bad news we got from our drs.  Meningitis Angels has given me answers and support through the survivors and parents of meningitis EBA or HBA.  I want to help in return, for my son.  Meningitis Angels is my new family. 

 
Adrienne Murray, It wasn't until about three years after my scare with bacterial meningitis that I felt ready to research the disease.  One of the first sites I came upon was meningitis-angels.org and instantly felt a connection with the people who had gone through the same thing I did.  I began my experience with Meningitis Angels by sharing my story.  The process of writing down my story and sharing it with others, I have made the first step in spreading the word and am eager to do anything I can to continue to raise awareness about this deadly disease.

 
Amanda Moran, I found Meningitis-Angels when I was trying to learn more about meningitis on the internet. I found the website and I immediately received all the answers to my questions. Meningitis-Angels means family to me. It is a group of people who understand what I have gone through and what I am dealing with each day. It is a place when I found my "Mama Bear," who prays for me, worries about me and loves me like one of her own.

 
Jennifer Smith, I  found Meningitis Angels through an internet search that I did while my mom was in the hospital with Meningitis. Meningitis Angels was the second site I visited, and by far the most user-friendly.  It helped me get information and also see that there are other people out there dealing with this disease as well.  Once it became apparent that my mom was not going to recover, the site really inspired me and helped me make a plan for how I could create something positive from the experience.  It led me to creating my fundraiser, "Bulbs for Betsy" and also to participate in the Jeff Burd Memorial Walk.  Both of these experiences enabled me to channel my feelings and energy into something that will actually make a difference!

 

Deb Jerdo, When my daughter, Lindsay,  died of meningitis, I thought I would die as well. I was not computer literate at the time, but asked my son to hook my computer and show me how to operate it.  We researched meningitis and there was Meningitis Angels!   My mind could not believe that there was a disease in today's day and age that could kill within hours...and that I did not know about it!  I had heard the "word - meningitis" before but did not know any symptoms or that my daughter's age group was at  high risk!  How could that possibly be?!  I entered the "Chat Room" there and found that I was not the only one who had suffered this devastating loss to this dreadful disease.  Together, almost daily, we chatted and helped each other through the pain and formulated positive actions we could take to make others aware so we would not have to watch others die from this vaccine preventable disease...like our child did.  Meningitis Angels saved me from an unbelievable life of hopelessness. My daughter, Lindsay, is not here physically but the work I do in her name...is how she lives on.  I can not thank Frankie Milley enough for this wonderful organization and the work she does in honor of her beloved son, Ryan. Deb Jerdo,  Mother of Lindsay Nicole Jerdo   12/16/83-12/24/01

 
Gene Siller, Upon my return from Geneva, Switzerland where my daughter was stricken with meningitis, I happened to go the pharmacy near my office.  While I was relating my story regarding my daughter's illness, the pharmacist and her assistant had a strange look on their faces. They told me a child in Houston had had the exact same presentation of symptoms and had died within hours. I told them I knew how lucky we were and that Maggie wanted to do something, be a part of something to help other victims and their families.  They told me about Frankie and the Meningitis Angel organization.  I went online to read about it and told my daughter about it as well.  She contacted Frankie and has become active in the organization.  It has meant a lot to both of us; in particular it has given Maggie the outlet she needed to deal with her own illness as well as reach out to others.  Thank you! 

 

Sherry Lopez, I had MRSA Bacterial Meningitis back in November 2000. I spent 5 months and 1 day in the hospital and blessed to be alive today to share my story. Before I got sick I thought nothing bad could happen to me and I felt like nothing could harm me but in one day my life took a total change, one that changed me forever.   I had never even heard of Meningitis before, neither had most of my family but we all got to know it’s effects all too well.After a long battle I was able to go home. I was still weak and disabled and felt as if my life was over. I ask my mom many times why me. Why God gave me meningitis. I tried to be good all my life. I never could understand it. She would tell me God didn’t give me meningitis He just allowed me to have it and survive and someday I would know why. I did not understand that but just went with it. Well one day I was checking my emails when I got one from a lady who had lost her only child because of meningitis. She had founded an Internet group in his memory. That group was Meningitis Angels and that lady was Frankie Milley. I do not know how she found me only that God sent her to me. She and I became pretty close and Meningitis Angels became my reason for surviving. At least to me. Through Meningitis Angels my story went all over the world. I met other people who’s lives were effected by this terrible disease. I still had the question why me and what good could come from this. Well that answer came to me at 2am I couldn’t sleep so I got on the Internet and went to the meningitis angel chat room there was a lady in there and her daughter had just lost her battle with meningitis. This lady was very torn up over it. She and I talked several hours and she started feeling better so finally we left and I went to bed A month later the question I had of why me was answered. That lady sent an email to me and said that night she came to the chat room hoping to find someone because she was going to take pills to take her pain away and I was there. She went on to say how if I could be happy after all I had been through and make good of a bad situation she could try. It has been 5 years since that night and I still talk to her. I would help so many that I never would have if it weren’t for Angels. I honestly believe if it weren’t for Frankie Milley and my Angel family I would not be here today. I am so thankful for God sending me Frankie Milley and the opportunity to help so many others. It has not been easy but after meningitis, the worst is over. Thank you Frankie!!

 
Gina Thompson, Heaven Bound Angel, Brandi Thompson's mother.  After my daughter suddenly and unexpectedly passed away from Bacterial Meningitis I searched for all the information I could find.  I happened to stumble across your Web sight which helped give me better understanding about the disease.  I was and still am doing everything possible to make the public aware of the importance of the vaccination.  I as well as several hundreds of people have had no education regarding Meningitis.  Since my daughters death on February 21,2007 the Thompson family have donated money to the Weber-Morgan Health Department to make the cost of vaccinations affordable.  The Valley Elementary School, Snowcrest Jr. High School and Huntsville Library held clinics for the vaccinations.  Vaccinations were given for $10.00 unless the child was on the free lunch program then the vaccination was at no cost.  A very large amount of people took advantage of this offer. SnowBasin Ski Resort, where my daughter was a lift operator work with us to organize a "First Annual Brandi Thompson Vertical Challenge".  This was in honor of Brandi and a memorial will be held every year on February 21st to raise money for Meningitis Awareness.  With the contribution we, the Thompson family were able to donate several thousand's of dollars to the Health Department to reduce the cost of the vaccination.
We as a family will organize and take part as a memorial to celebrate Brandi's life. We also contacted several schools asking the message be sent out to parents with each of the children’s report cards.  The school's agreed and parents were alerted.

Tell Us How You Found Angels and What It means To You

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