Rice Boys Journey 2 Healing
Spende geschützt
Hi, my name is Adam, I’m 15 years old. Meet my family, Dad, Phillip, Mom, Angie, and two younger brothers, Jacob and Lucas. I have a not-so, well known genetic disease that possibly affects both of my brothers as well. We really really need your help. You see I have been in pain all my life. Never having any answers from the specialists here, it took us 12 long years to find answers about the pain I was in. First we went to Charleston to a rheumatologist, he sent me to Cincinnati Childrens Hospital along with my brothers. Since it is genetic CCH wanted them there as well. But I will leave that explanation to my mom. She is good at explaining that stuff. She is learning all she can, driving herself into the ground trying to help us. She has made herself sick, hospital sick I mean. My dad too, he has been to the hospital 2 times in a month, once in an ambulance. Mom is trying really hard to help him and us, all by herself. We have almost no family left, most have died and a few others live far away. So her dad, my Pop helps us mostly, he’s the BEST! Anyway it’s just us, God knew this, so He gave me a really awesome family to help as much as they can. I am unable to do a lot of what kids my age can because of the many health problems I have. And can’t help my mom as much as I want to, but this is one thing I can do. We need your help!
Please allow me to explain, Ehlers Danlos Syndrome (EDS) a genetic connective tissue disease that affects a wide variety of things, but for me, it affects every joint in my body, veins, arteries and other things that I don’t quite understand. My body produces an incorrect version of collagen. It is really important, not just skin and wrinkles, it is in anything and everything in your body that moves: joints, muscles, organs, veins, arteries and yes, the heart. The version of collagen I produce allows me to stretch quite far in odd and mysterious ways. I can throw my shoulder in and out of socket at will, with little pain (usually). And, up until I was about fourteen, I could not even touch my toes! (I will get back to that.) I have other problems too as a result of EDS; POTS for short (most of these have a for short) DDD, and my spinal cord is scrunched up in my neck. (mom will explain that later, it’s a lot) I live in excruciating pain, always have. It’s like having a one-hundred and fifty-pound man sit on your head. It’s like that, CONSTANTLY! Three discs in my neck, between the vertebrae are completely disintegrated. (I know, disintegrated is not a word frequently used in a true story, but they did.) The bones are rubbing against each other, VERY PAINFUL. Normal discs are wrapped in collagen (learned that at Cincinnati Children’s Hospital) and the faulty collagen caused the discs to disintegrate. This caused a problem in my frame that made everything imbalanced. So as I grew, my hamstrings and yes even bones in my spine didn’t, (along with a lot of other things) and this prevented me from touching my toes. (SEE!! I did get back to it!) Until I was about ten-ish, I did not know that being in pain constantly was not normal. Didn’t know that other kids my age didn’t feel the crushing pain in their skull and spine, didn’t always feel like they were going to pass out. That all kids didn’t feel like they had just run a thousand miles after taking only a few steps and have a random part of their body start hurting or even slip out of joint for no reason whatsoever, making their life so much harder. Yep it’s that hard! We are all fearfully and wonderfully made, God made us all. All brothers and sisters in Christ but each unique. Made in His image, my brothers, I and are made in His image, not made wrong, we are just us, uniquely made in Gods image. Our bodies work differently, so we make adjustments in order to make our life hurt less.
The Cincinnati Children’s Hospital has an EDS clinic that specializes in treating kids like me and my brothers. They taught us a lot the first time, but there is way more to learn. Unfortunately, EDS is—as far as they know—incurable, but we can manage symptoms and prevent more damage to our bodies, most of the time. We learned a little of how to do that with me—for the most part—but I need to learn much more as I grow. My brothers have been showing signs of what I have for a while now. They are in pain too and need to be checked out by the doctors that helped me.
We all need your help, my whole family, to make the 800-mile trip to CCH in a few months. My mom says our doctors will need to send us to different hospitals to help us heal in the different parts of our bodies affected. I told you it was a lot! But we have learned, take one thing at a time. We will work really hard to get well. We just need to know how.
PLEASE HELP US!!
Adam Rice
Please allow me to explain, Ehlers Danlos Syndrome (EDS) a genetic connective tissue disease that affects a wide variety of things, but for me, it affects every joint in my body, veins, arteries and other things that I don’t quite understand. My body produces an incorrect version of collagen. It is really important, not just skin and wrinkles, it is in anything and everything in your body that moves: joints, muscles, organs, veins, arteries and yes, the heart. The version of collagen I produce allows me to stretch quite far in odd and mysterious ways. I can throw my shoulder in and out of socket at will, with little pain (usually). And, up until I was about fourteen, I could not even touch my toes! (I will get back to that.) I have other problems too as a result of EDS; POTS for short (most of these have a for short) DDD, and my spinal cord is scrunched up in my neck. (mom will explain that later, it’s a lot) I live in excruciating pain, always have. It’s like having a one-hundred and fifty-pound man sit on your head. It’s like that, CONSTANTLY! Three discs in my neck, between the vertebrae are completely disintegrated. (I know, disintegrated is not a word frequently used in a true story, but they did.) The bones are rubbing against each other, VERY PAINFUL. Normal discs are wrapped in collagen (learned that at Cincinnati Children’s Hospital) and the faulty collagen caused the discs to disintegrate. This caused a problem in my frame that made everything imbalanced. So as I grew, my hamstrings and yes even bones in my spine didn’t, (along with a lot of other things) and this prevented me from touching my toes. (SEE!! I did get back to it!) Until I was about ten-ish, I did not know that being in pain constantly was not normal. Didn’t know that other kids my age didn’t feel the crushing pain in their skull and spine, didn’t always feel like they were going to pass out. That all kids didn’t feel like they had just run a thousand miles after taking only a few steps and have a random part of their body start hurting or even slip out of joint for no reason whatsoever, making their life so much harder. Yep it’s that hard! We are all fearfully and wonderfully made, God made us all. All brothers and sisters in Christ but each unique. Made in His image, my brothers, I and are made in His image, not made wrong, we are just us, uniquely made in Gods image. Our bodies work differently, so we make adjustments in order to make our life hurt less.
The Cincinnati Children’s Hospital has an EDS clinic that specializes in treating kids like me and my brothers. They taught us a lot the first time, but there is way more to learn. Unfortunately, EDS is—as far as they know—incurable, but we can manage symptoms and prevent more damage to our bodies, most of the time. We learned a little of how to do that with me—for the most part—but I need to learn much more as I grow. My brothers have been showing signs of what I have for a while now. They are in pain too and need to be checked out by the doctors that helped me.
We all need your help, my whole family, to make the 800-mile trip to CCH in a few months. My mom says our doctors will need to send us to different hospitals to help us heal in the different parts of our bodies affected. I told you it was a lot! But we have learned, take one thing at a time. We will work really hard to get well. We just need to know how.
PLEASE HELP US!!
Adam Rice
Organisator
Angela Rice
Organisator
Enoree, SC
