Dear Melinda Gates,


 

You are featured on Babble.com, as one of the Mom’s who is changing the world. You are number 1 on their list. Number 1 for your Charity work. Now, I know I don’t know you personally, but we just might have a few things in common. If this Open letter somehow reaches you, I really hope you will take 5 minutes to read it. I’ll start with the things that we seem to have in common, Mel. Is it o.k. if I call you Mel?? I hope so, as it seems to fit the picture of you that is smiling back at me from my computer screen. You seem like a happy person. I’ll bet you would be fine with Mel. So, Mel… here we go. Let’s start with the first thing I think we may have in common, which is the one that I think is the most important. Being a mom. I am a mom too. It is the most rewarding thing I’ve ever done in my life. Right now, I am having a hard time being a mom because I just had my 3-year-old stolen from me by this disease called Neuroblastoma. Have you heard of it? I’m assuming not. I hadn’t until the day my precious 3-year-old son, was diagnosed. I’ll give you a little tutorial so you can get a better idea of what it is. I could just be vague, and say he was stolen by Childhood Cancer, but I can’t do that to him. He deserves to have you know the exact name of the monster that took him away from me.

N E U R O B L A S T O M A. There it is. It even looks ugly just written out. Oh, Mel. You have no idea how ugly it is. It is killing hundreds of children a year and nobody seems to care because they say it is RARE. How can something that over 700 kids are diagnosed with a year, be considered rare? I’ll never understand that. Even if only 50 children were diagnosed a year, that should still not be considered rare, because it is a problem and since when did our children’s life value become justifiable because of a “rare number?”

Here are your cliff notes to catch you up to speed. I know you are a busy woman, so I don’t want to keep you longer than I have to. Neuroblastoma is a rare disease in which a solid tumor (a lump or mass caused by uncontrolled or abnormal cell growth) is formed by special nerve cells called neuroblasts. Normally, these immature cells grow and mature into functioning nerve cells. But in neuroblastoma, they become cancer cells instead.

Neuroblastoma most commonly starts in the tissue of the adrenal glands, the triangular glands on top of the kidneys that produce hormones responsible for controlling heart rate, blood pressure, and other important functions. Like other cancers, neuroblastoma can spread (metastasize) to other parts of the body, such as the lymph nodes, skin, liver, and bones.

In a few cases, the tendency to get this type of cancer can be passed down from a parent to a child (familial type), but most cases of neuroblastoma (98%) aren’t inherited (sporadic type). It occurs almost exclusively in infants and children and is slightly more common in boys than in girls. There are never really any warning signs and it is usually not caught until it is Stage IV. That is when Ronan’s was detected and our only sign was his little left eye, started to look lazy. Other than that, he spent the summer in Washington State (another thing we have in common) running around, happy as clam.

Children diagnosed with neuroblastoma are usually younger than 5 years old, with the majority of new cases occurring among those younger than 1 year old. About 700 new cases of neuroblastoma are diagnosed each year in the United States.

This is the disease that killed my child. Him. Ronan Sean Thompson. Age 3. And yes, those are his real eyes. I know. Have you ever in your life, seen eyes that are such a piercing blue color? I hadn’t until he came along. He looks like a fake doll, doesn’t he? He was not fake. Although now that he is gone, my mind often tries to trick itself into thinking he was not real because the pain of missing him is sometimes too much to take. You have no idea what I would give to be able to look into those eyes again. Instead, I know get to stare at his Urn full of his ashes on top of my dresser in my bedroom. Can you even imagine such a thing? I couldn’t, until it happened to me. It happens, Mel. All of the time but it seems that people think Childhood Cancer is too sad of a story to shed any light on. That to me, may be even sadder than the death of my son. Well, maybe not… but it is very close.

The second thing we have in common Mel, is that we are both if first place for this contest. FIRST PLACE! I’ve never won first place at a thing in my life! O.k…. maybe I have, but I don’t think I should count that beer chugging contest that I won in High School. Errrr…. I mean when I was 21. A stranger nominated me for this and I have had so many people voting and spreading the word because they believe in me and the love that I have for my son.  I don’t know if you win any money from this contest, Mel, because I think you are in a different category because of your very well known last name. I’m winning in the Charity category and I am just a simple, stay at home mom. Nobody really knows me the way they know you, but I am about to change that and I could really use your help. If I win, I win $5,000 dollars which will go to the charity I have started up in honor of my son, The Ronan Thompson Foundation. I have decided to take that money to help a local family whose little boy was just diagnosed with Neuroblastoma as well. I know $5,000 dollars seems like very little to you, but that very little is going to go a long way for this family. They have insurance, but I know how quickly everything adds up. I know how stressful it can be to have a child with Cancer and to have all the little problems start to pile up as well. If I can help this family, by doing something as little as this, I have decided I would like to do so. I’ve also decided that even if I don’t win, I am going to give this family $5,000 dollars to help them. They deserve a break and Ronan would want me to help. He would be proud to know that I am trying to take the pain of his death and trying to channel it into helping other. We are fortunate to be able to do so thanks to all the support of our family, friends, strangers, and community. We are very much blessed in that way.

The third thing we have in common seems to be our hearts. You seem to have a good one. I know I have a good one. I had a good one before all of this, and now it is trying to grow even bigger. I’m not going to lie. At this very moment, my heart just feels heavy, black, and empty. But I cannot live with my heart like this forever. Ronan filled it with so much love that I know it will find it’s way back to me. It’s only been 4 months since I lost the love of my life. It is going to take time to get my heart back, but I will do it for Ronan and for his 8-year-old twin brothers. I don’t have a choice as I still have a responsibility to give Ronan’s brothers a really good life. I don’t think their life would turn out very well if they had a mommy who had lost her heart and never found it again. I do believe, that in time, my heart will find it’s way back to me. I just have to be patient. Your heart seems to be filled with love, which is such a beautiful thing. I am sure you know how lucky you are to have healthy, beautiful children.

I noticed that a lot of your Charity work goes towards Humanitarian efforts which I think is amazing. The number $37 BILLION, jumped off the computer screen to me. WOW. That is impressive. $37 billion dollars that you use for Humanitarian efforts such as Ghanda and funding child hunger programs. I wonder if you would consider, Childhood Cancer as a Humanitarian effort? I’ll bet if you spent some time on a Children’s Oncology floor, you would. You would see how the lack of financing, education, and awareness is basically murdering these innocent children. Yes, I said murdering which I know is a harsh word, Mel. But it is the truth. It is because of the lack of these things, that my child was murdered by not only Cancer, but the Medical Community as well. They failed us which is so heartbreaking because it is so unnecessary in this day and age. Did you know that Pediatric Cancer is the #1 disease killer in the US? Pediatric Cancer kills more kids then AIDS, Asthma, Multiple Sclerosis and Muscular Dystrophy COMBINED and the really sad part of this is that no one knows this. Doctor’s do not educate parents about this. And to top it off, Pediatric Cancer research gets the least financial funding. Less than 3%. That is tragic and I just don’t understand why people are not making more of a fuss about this. I think a lot of it has to do with the lack of awareness the comes with Childhood Cancer. It is easy to look the other way and ignore it because it cannot happen to you. I’m here to tell you, it can. This is real and not something to be taken lightly. Our future generation is dying by the thousands, everyday. What needs to happen to make a change with the way this is overlooked? Do the streets need to be lined with the dead bodies of our bald-headed kids to get someone to pay attention? That is what it is starting to feel like.

I am putting your Momination blurb in here are well. This is what they had to say about you.

Co-founder and co-chair of The Bill and Melinda Gates Foundation, Lady Gates is a humanitarian powerhouse. The organization currently manages projects ranging from domestic school reform to biodiesel efforts in Ghana and has managed more than $37.1 billion in assets since 1994 and projects in more than 100 countries. Both Gates and her husband take a big picture view—save the most people first. Major Gates Foundation projects have included substantial funding to child hunger programs, polio eradication efforts, immunization work, and farm support programs. As for her personal stake in the Microsoft empire, Melinda and her husband have reportedly reserved $30 million of their empire for their three children and plan to donate much of the rest of their $56 billion net worth to humanitarian efforts worldwide. As for why she does it, Melinda cites her daughter. “I really want her to have a voice, whatever she chooses to do,” Melinda told Fortune Magazine. “I need to role-model that for her.”

You say your daughter is a big reason for you doing what you do. I am sure you are an amazing role model to have and she is so lucky that you are teaching her about all of the worldly things in life. You want your daughter to have a voice and I have no doubt she will have a powerful one and do amazing things with it. I wanted my Ronan to have a voice too. He doesn’t get to anymore so that voice now has to come in the form of me. If you were to know me, you would know that I tend to be on the quieter side. I don’t really like attention which seems like such an oxymoron since I have taken our very personal tragedy and turned it into a very public forum. I have a couple reasons for doing this, but it actually very simple. Everything I have done from the time of Ronan’s diagnoses, until now has been about living my life the way he would have wanted to live his. This fuel and fire inside of me, all comes from Ronan. He gives me the strength, power, and love that keeps me going. I know people don’t really want to listen to our sob story, but I refuse to quit being honest and blunt about it until things start to change. I have to continue to break the rules for Ronan, which was one of our favorite things to do together; to make these changes happen. I know most people do not understand the way I have chosen to share our story in such a public way; but in order for things to change, this is how it has to be. My son died, Mel. He doesn’t get to live on this earth anymore and he deserved to have the most beautiful life. His soul is still here though and I know he is hurting from seeing his mama, his best friend, in so much pain. I am here to tell you, my soul will never be at peace until I start to see a change and less and less children are dying from Childhood Cancer.

So can you help me? Can you help Ronan? It seems like such an easy thing to do. One look at his beautiful face should be enough for you to want to. I need somebody powerful on our side. Somebody who has the heart, compassion, and voice to help us. You are already doing such wonderful things in the world. How about adding Childhood Cancer to your list? Before you say no, can you do me this favor? Can you at least go to your local hospital and visit their Oncology floor? I know this may be too sad for you but if you need strength, you can channel it from me. I lived in and out of hospitals with Ronan for 8 months. I survived. I promise you will too. I also promise you that by stepping on that floor, your life will be changed forever. In the most beautiful way possible. Each and every one of those kids is a GIFT. I need your help so that they can stop being thrown away. They deserve to grow up into the amazing adults that they want so badly to become.

Thank you so much for your time tonight. I hope my letter made sense to you as I now function on very little sleep due to missing my little boy so much. It’s 2:43 a.m. here. Sleep is no longer my friend. I worry about Ronan more now that he is gone, than I did when he was still here. It is amazing how strong a mother’s love, truly can be. My love should have been enough to save him, but it wasn’t. I have to live with that everyday of my life. I have to learn to live a new life, without him. The only way I am going to be able to do that, is by getting people to start paying attention so hopefully another family, someday, will not have to suffer like we are.

G’nite, Mel. Sweet dreams to you. Thank you again for your time.

Fondly,

Maya Thompson

Mama to Ronan

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28 thoughts on “Dear Melinda Gates,

  1. Claudia

    A few more facts from another friend who’s 19-year old daughter has cancer that might also be helpful:

    September is Pediatric Cancer Awareness Month…..

    September is Pediatric Cancer Awareness Month and so tonight, as a reminder, I am repeating some of the information that I shared with you last September.

    The following information is from the http://www.WeAreKids.net website which features organizations that support kids with cancer in the DFW area:

    Childhood Cancer Facts

    Cancer is the most common disease-related cause of death for ages one to twenty, and the fourth most common cause of all deaths, after accidents, homicides, and suicides.

    1 in 330 children have a chance of getting some type of cancer between the ages of newborn and 21.

    There are 15 cases of pediatric cancer diagnosed for every single case of pediatric AIDS and yet the U.S. spends $595,000 for research per patient of pediatric AIDS, yet only $20,000 per patient of pediatric cancer.

    The largest children’s oncology group in North America, which supports the clinical and biological research at over 200 participating institutions and treats 90% of children with cancer, received less than half of its requested budget from the federal government this year.

    Nearly 30% of U.S. population is under the age of 20. In this age group:

    •Approximately 12,400 are diagnosed with cancer each year. (Approximately 35 children every day )

    •In 1998, about 2500 died of cancer.

    Cancer is the number one disease killer of children and kills more children per year than cystic fibrosis, muscular dystrophy, asthma and AIDS combined. Yet the budget of the National Cancer Institute allocates only 3% of its funds to pediatric cancer research.

    The most common types of cancers in ages 15-19 are:

    •Hodgkins disease 16.1%

    •Germ cell tumors 15.2%

    •Central nervous system tumors 10%

    •Non-Hodgkins lymphoma 7.6%

    •Thyroid cancer 7.2%

    •Malignant melanoma 7%

    •Acute lymphoblastic leukemia 6.4%

    The incidence of childhood cancer peaks in the first year of life. Infant boys and girls are diagnosed at about the same rate, which is notable because it is the only age for which female childhood cancer rates are not lower than male.

    Neuroblastoma is the most common type of infant cancer (28%), followed by leukemias (17%) and central nervous system cancers (13%). Germ cell and soft tissue tumors were each about 6%.

  2. Katie

    Beautifully written! I could not even imagine having the courage you have. The love you have inside of you is what makes me cry when I read this. The courage and the fight in you is astounding. Ronan, your family and you, Maya, truly inspire me to be better and kinder and happier and more loving mother, partner, friend and human being. Thank you! Thank you for taking your sadness and anger and amazing love for your beautiful baby and sharing it. For teaching us and making us aware! Thank you!

    1. Rose Koussa

      Thank You Leah for this information, I sent an email to those addresses also and I hope everyone who follows this site just takes 2 minutes out of their time and sends the link to this post in an email or the post itself because changes are made with large numbers.

  3. eliz

    I just emailed the link and content to this post to the email addresses listed above by Leah. Maybe there is strength in numbers. Let’s all send this to those email addresses.

  4. Sara Knilans

    Hi Maya,
    About a month ago my sister in law had your story on facebook and asked people to vote for you for the moms who are changing the world. I read your story and of course immediatley voted for you.

    Maya, I am a mom too, I have a little 4 year old boy, his name is Noah. He is my little miracle….it took me 7 years, 6 months, and 24 days to have him and he is my life. All I ever wanted was to be a mom, and he has completed me. I know he is the only child I will ever have and I am so grateful for him. I know you feel this way about all 3 of your boys.
    When I first saw Ronan, I felt connected to you and to him because of those big blue eyes. Noah too looks like a fake doll because he has these huge gorgeous blue eyes…..I had never seen anything quite like this before. The first time I read your blog I also felt connected to you and Ronan because every night when I kiss Noah to bed I say ” I love you monkey, to the moon and back” although Noah doesn’t know much about Star Wars (he is more into spongebob) that is our thing.

    Today I felt connected to you and Ronan again when I read that Ronan calls you “mama.” That is what noah calls me, and I am not sure how or why he started calling me that, but I hope he calls me that forever….I love the way he says that and “dada” it sounds like he is british or something.
    Anyway, I feel connected to you maya, because it never seems like anything bad is going to happen to us and so we shove all these little stories in the backs of our heads and then one day we wake up and WE ARE THE STORY…..

    I wish I could do something ANYTHING for you, to make that hole in your heart go away…but it will be with you forever and I too say FUCK YOU GOD….there is nothing in the history of the world that justifies a parent burying their child. NOTHING

  5. Wil Schommer

    I bet the odds and survived stage IV Neuroblastoma. I had 6 rounds of chemo, radiation, and a bone marrow transplant. I only had a 20% chance of survival. I didn’t do this on my own, it was entirely my parents who never took no for an answer. Without them I am certain I wouldn’t be alive today. I am only 18, I study at Austin College in Sherman, Texas. I am a student-athlete and studying to be a high school history teacher and a future baseball coach. After reading this I got tears in my eyes. I truthfully don’t know how you are feeling because I haven’t had to deal with a tragedy like this from your perspective but I am a VOICE. I will do anything you need me to do for the Ronan Thompson Foundation because I feel like I am a person that can make a stand with you and help make Neuroblastoma and other deadly pediatric cancers more aware to the public and that it’s not just about the breast cancers and the lung cancers, but that innocent children like Ronan, and me, who have deadly diseases that were completely unpreventable.
    Do y’all know that since I underwent my treatment back in 1997, they have yet to make any improvements. Everything that they did to me they are still doing today, no one has conducted a working method to save lives.
    I am willing to do anything that you need me to do to save kids life. Every child deserves a life like I have been blessed with and I will do everything in my power to help make that happen.
    During the Arizona high school baseball tournament this past spring my coach, Ray Mota (a fellow cancer survivor) and I put big “R’s” on our hats to honor Ronan.
    Even though I never knew Ronan, he will always be in my heart and I love the kid and he will always be in my prayers.
    To reiterate it again, I’ll do anything you need me to do.
    With love,
    Wil Schommer

    1. Christina Appleget Van Hise

      Wil,
      After reading your post I am in tears of joy and sadness. I am so happy you are here to share your story with us and that you have a heart so big and so good to reach out to Maya in the way you have. I am also so sad that sweet Ronan and so many other kids never had the chance and opportunities that you have. That there have been no advancements in decades for this monster is unacceptable to me. God Bless you, Wil, your story just makes me want to fight even harder for these kids!

    2. Lisa

      Wil, you make your Mother very proud. Wil’s strength and spirit will be a huge asset in helping to fight Pediatric Cancer.

      Wil’s Mom, Lisa

  6. Glenda

    OMG Maya and Wil… tears

    Wil you made me cry… that is amazing that an 18 year old will be THE VOICE to help Maya and the Ronan Thompson Foundation.. you are an amazing beautiful young man.

    xo to the both of you

  7. I think you're awesome.

    Maya, do you know about this family:
    http://thematthewsstory.com/the-quicker-story/

    Ronan. Layla Grace. Tuesday. Ezra. How many more? I can’t wait to watch what you’re going to make happen. Not doctors, not researchers or scientists. YOU. And the other mamas and papas, and brothers and sisters, who refuse to let this disease take any more beautiful, perfect, gloriously innocent little people from this planet.

    I can’t wait to watch…and actually, I hope I get to be there for some of it. Please know, Maya, as soon as you begin to feel a little better, as soon as you finish your research and decide on a permanent direction for The Ronan Thompson Foundation, you’ve got A LOT of us girls waiting to jump in and fight with you (and probably a few guys too). 😉

  8. Jera

    Maya,

    Your letters/posts like this is what made me stand up and do something the minute I heard my youngest daughters classmate’s baby brother had leukemia. I have tried to do everything you have done or has been done. You really are an inspiration and if by chance Bekkem Barela makes it through this horrible six months you will have had a hand in it. You inspire me. I may not be rich or powerful, but you moved me not to ignore, but to do something. I swear I feel crazy out of my mind with the emails, ordering, website updates and redo’s, but you make it worth it. With my friends Jen, Charlotte and you in my head, we are helping feed and hopefully raise some money so they don’t have to worry about the mortgage for a few months.

    Jera

  9. Amber

    Wil you are amazing! I saw the article on you when you wore that hat for the baseball game and I cried because that was so awesome. Now as I read your respone I cried again but its people like you and Maya who are going to help this disease and the chidlren diagnosed with it. We are all behind the both of you.

    I hope that Melinda gets this post from all of us that have sent it to her and I hope she reads it and considers it. With her behind Rockstar Ronan there’s no telling where this could go.

    Maya – I had a dream about Ronan last night. It was beauitful and I thanked him for coming into my dreams, even though I never met him in person. After I dreamed about Ronan running around causing mischief, I had the craziest idea come for a commercial about Childhood Cancer Awareness. I’ll try to write it all down and email it to you someday.

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