Jaden’s Story

This story was written by Jaden’s nana from his perspective.

Hello, my name if Jaden, I was born 3/13/06, I want to be a Paleontologists when I grow up, I love everything about Dinosaurs. I have learned so much about them. Some folks say I am obsessed with Dinosaurs, whatever than means. I think every Paleontologists was fascinated about them like I am when they was my age and that is why they dig Dinosaurs like me. You should have a passion. That’s what my Nana’s says anyways, something you like and you enjoy that brings you happiness. I live with my Nana ever since December 2011. I was very sick before then, I never really talked much, I have never been able to walk very well, noises have always hurt my head and ears. I was just a little kid back then and did not understand much, heck some folks say I still don’t cause I can not read or write. I understand more than they know just because I may not be able to read or write, or sometimes not able to talk doesn’t mean I’m stupid. My Nana taught me that, she says I am a very smart boy.

Once I got to live with my Nana because I was so sick she took me to doctors to try to find out what was going on, my Nana is kind of smart like me in that area. She might be older than some but she hasn’t lost all her marbles yet.

Because I am not able to speak most the time she is my voice and let me tell you something about her, she speaks loud sometimes, especially when it comes to me. She kept telling them Doctors she wanted answers, why is he not able to walk very far, why does his muscle jerk so much, he is having seizures, (she knows because she raised a child with seizures), he barely talks, troubles with eating, stomach issues, he is in pain most the time, headaches, with many more difficulties. She kept pushing for answers. They did MRI, Bone, Scan, Genetic Testing and Comprehensive Epilepsy Panel testing. That was a few years after living with my Nana and they found things in all, test. My Nana gave them doctors a what for, something I told you something was going on. Now why, what is the growth in the brain, why does he have skull fusion, what is the curved spine from, what does the Genetic testing mean. One of the Genetic test was a Mutation DNM1 along with Xp22.31, 8q22.2 duplication. The Specialist seemed to be concerned about the DNM1 Mutation, oh I forgot to mention all the EEG showed abnormalities in brain waves. That is another things I live with is memory problems, I forgot my half sisters names not long ago, my memory keeps slipping more and more and sometimes I get scared from that. Like am I going to forgot my Nana one day, am I going to forgot who I am. Will I forgot we tell each other I love you to infinity ever night. I love with many difficulties many do not understand, some do not accept because they say I look normal. That confused me when I heard that, what does that mean. I don’t think I’m broke. Nana said some folks just don’t understand because where they are, some folks just haven’t experience life enough. Oh and that normal is really just they setting on the washer. My Nana is kind of goofy at times, sshhh don’t tell her I said that. She will show me how goofy she can be and you haven’t been in public with her. She is something else sometimes. She is fun though, she makes me laugh. She helps me on my bad days, I have lots of them. I use a wheelchair part of the time and for an old lady you should see her load that thing. Man she gots some arms on her. Nana is my hero and Nana tells me I am hers, She calls me her Zebra Warrior. I am Jaden living with a Rare Disease DNM1 Mutation that very few know about let alone understand, don’t discount us and our journey just because you don’t understand it, we all struggle in our own ways. All I want is to grow up with the best quality of life I can have and be a paleontologists.

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