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    Posted January 22, 2014 by
    Scranton, Pennsylvania
    This iReport is part of an assignment:
    Living with a rare disease?

    Rare Disease

    Aimee L Dickey, had a14 month battle with a DIPG (diffuse intrinsic pontine glioma) brain tumor passed at the age of 12 on 12/12/08.. Aimee knew the day she was diagnosed that she was going to die, during her journey she did everything she could to raise awareness about her disease, and was invite to speak in Harrisburg PA at our capital about her disease but unfortunately her tumor had other plans... Here is her final letter to me, as to what her vision of her foundation was to be...
    She also came up with a ribbon design attached and slogan "A ribbon is just a ribbon without a face, add pigtails and a baseball cap and it become a child" Aimee Dickey forever 12 DIPG are considered to be very rare 200-300 children per year.. It's so rare that it's not even listed in any medical dictionary, nor do doctor's often refer to it as a DIPG.. Mostly a brainstem glioma, although with the brainstem being in 3 section, some are survivable while DIPG's are not, nor without further study, and more awareness will there ever be even a short term survival.
    Dear Mom,
    I guess if you are reading this then it was my time to go home to our father’s house. Thank you for bringing me back to PA so I was able to see all of my family here and to say goodbye. I just want you to know how much I love you, and want to thank you for doing everything you have done for me all my life, you are the best mother any child could hope for and that is not just from me but Bobby and Jennifer as well. You were so active in my life, and supported me in all my dreams even if you didn’t think they were good dreams you always encouraged me. Your care for me especially now during my illness is more then any parent should have to go through. Thank you for not giving up on me and take every chance you could to find me a cure and for working to get me better.
    As you know I am very strong in doing research to find a cure for childhood cancer so in time no other parent will ever have to hear your child has cancer and there is nothing we can do. I know we have talked many times about what I want Aimee’s Army to become, but I want to write it here just in case you forget.

    1. I want Aimee’s Army, first to do awareness, then fund-raising you can’t raise funds if people don’t know this is out there. Bobby, Jennifer and Jessica can have an part in helping with the foundation but don’t let them run it. They aren’t as good at it as you are. In time when Emma gets older I want the foundation to go to her and any other children Bobby and Jess might have and if Jennifer should ever have children hers to. Please, continue to make my walk a yearly event if at all possible. I know that it will take time to be as big as that of the Susan G Komen foundation but you have time. Don’t forget all the organization I sent you through Charity Navigator so you can figure out where to send my money. Don’t forget if more money goes to the boss’s then I don’t want you to give them my money. Only if they really spend it on research. I don’t want to pay for someone’s vacation.

    2. Try to start a support group, in our area. I didn’t like when they turned us down through the Leukemia foundation, and the American Cancer Society, like you said at least they have hope I had none. It made me feel as though me being sick wasn’t as important as someone else. I know you can do this. (remember how I told you our secret for now)You have taught me well and have given me so much support I know you can help other families that are going through what we are. I just wish they didn’t have to, but in time you will see.

    3. Don’t forget to give everyone what I gave them (you have my will) you don’t have to do it right away but when you are ready if they can’t wait to bad. Like I said if they fight then they get nothing. I am only doing this because I love them all so much and I don’t want them to fight over my things.

    4. If and when Aimee’s Army gets big enough and you get all the awareness out there and start to get a lot of money, maybe you can help support new families with their bills, like we were in the beginning. But, fist try to find a cure then families won’t have to be here in the first place. You will know when the time is right to change things if you need to.

    5. I want you to tell to my story to anyone and everyone. Use my name anyway you need to. But, don’t forget to also support other groups and remember it is not about me totally but all the children past, present and future. The more faces and stories everyone hears the better chance we will have a finding a cure.

    Mom, please always remember that I am with you every second of the day even though you can’t see me, I am right here with you. If you should get stuck I will give you a whack on top of the forehead just like you should have had a V-8 remember. Also, Mom don’t dare let me see you crying and laying around all day. You will never be able to see my dream come true doing that.

    No matter what please don’t give up your faith it will help you deal with what you are feeling. Trust me I know these things. Again, Mom I love you so much, and I have thanked God everyday since I was a little girl for given me a Mother like you. I would never change a thing in my life with you. Don’t forget to read that poem I sent you a while back every night before you go to bed. And remember I am not that far away from you and I never will be. I will be there if and when you really need me too but I know that you are a very strong person who taught me well and you will be fine. As you told me once you will forever have our memories in your heart, so I can never really be that far from you.
    Forever and always,
    Aimee Lynn Dickey
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