Boy Won the Wrong Lottery
Donation protected
I won a Lottery that I didn’t wish to win!
My name is James; I just turned 12 years old. There was a “1 in 2 million chance” to get FOP and I WON it!
FOP means Fibrodysplasia Ossificans Progressiva and that means that my muscles joints and ligaments are turning to bone and there is no way to stop it from happening. I can no longer reach my head to scratch it or comb my hair; I can’t even bend to reach my feet. Walking is painful and hard on my stiff body and is not safe for me.
I need help raising enough money to modify our van to get my electric wheelchair inside. I know it is hard to donate to someone you don’t know so I will tell you about myself and my family. I was born in a hospital and the doctors told my parents that I was a healthy, strong 11 lb baby boy. No one knew that there was something terrible that was going to be happening to me when I grew older.
In the summer of 2009 I woke up with a large painful bump on my left shoulder blade and a bloated stomach. I was in a lot of pain and the pain and swelling just kept growing every day. My parents brought me many times to the doctors, and hospitals before someone finally figured out the bump is not just a bump, I had something worse. I was diagnosed with an ultra rare condition called Fibrodysplasia Ossificans Progressiva (FOP), which means my muscles, joints, and ligaments are tuning to bone. I never heard of this before and neither did my parents, I was kind of scared and in shock.
I also never knew that when I woke up that day with the painful bump that I would not be able to play like I did before. Now I have to be careful not to get bumped, bruised, stretch my muscles, or even fall because that would speed up my loss of muscle and replace it with bone, making it impossible for me to move that area of my body ever again.
My neck, back, and chest are stiff because of FOP and instead of having muscle there, I have bone. I cannot turn my head sideways, look up, or down because my neck muscles have turned to bone making it impossible for me to see what is above, below, beside or even behind me without turning my whole body around. When I breathe my chest does not move because the muscles have turned to bone, I breathe only with my stomach. My arms are stiffening to my sides and I can only move them slightly to reach items. I am happy I can move my elbow really good and my knees! My hips have been hurting for a long time now and I fear that one day I will wake up and not be able to move my legs any more.
I need to use my electric wheelchair now because I find it very tiring and at times very painful to walk. FOP is gradually taking my freedom away and I always have to struggle to find a method or creative a way to regain what I can back. Please help me do this!
I would really love to be independent again and be able to drive my electric wheelchair everywhere, like into the van and where ever we go.
I know my parents know best and to me my parents are the best ever! I am so glad I have them and I know that they are having a hard time finding and buying items I need daily, but my parents are creative and have made a few things themselves. But they can’t modify the van themselves and it will cost a lot of money. This is one of the places that I am hoping to raise money for! If there is any extra money donated, then I am hoping for the dream of a modified bedroom and washroom, so I can be free to be me!!
One year ago, our 10 year old van was struck from behind, my family was devastated! My parents were forced to buy a new van. The van they bought can be modified to allow me to drive my electric wheelchair into it. But, my parents spent all their money on it and can’t afford to modify it right now. I saw my mom’s face when she found out how much it would cost to modify the van, I felt so sad for her and I know she has been spending a lot of time trying to come up with money to modify it. I am not sure how I can make things right.
But I do know I need to get my electric wheelchair to go with me so I can move around on my own and not have to slow my parents down so much. I can only walk short distances then I need to rest. Sometimes I get too tired to continue and I am not even finished our outing. Usually, I say I don’t want to go out with them because I see how hard it is for my family to bring me along. But, my parent always make me come anyway which I am glad. I want to do something nice for my parents as they have done for me.
Please if you can help me raise the money to modify the family van I would appreciate it so much! I am not sure how much it will cost, but I believe I heard it would cost around $26,000. Mom and Dad if you see this post, I love you and hope this helps! Love your son James
My name is James; I just turned 12 years old. There was a “1 in 2 million chance” to get FOP and I WON it!
FOP means Fibrodysplasia Ossificans Progressiva and that means that my muscles joints and ligaments are turning to bone and there is no way to stop it from happening. I can no longer reach my head to scratch it or comb my hair; I can’t even bend to reach my feet. Walking is painful and hard on my stiff body and is not safe for me.
I need help raising enough money to modify our van to get my electric wheelchair inside. I know it is hard to donate to someone you don’t know so I will tell you about myself and my family. I was born in a hospital and the doctors told my parents that I was a healthy, strong 11 lb baby boy. No one knew that there was something terrible that was going to be happening to me when I grew older.
In the summer of 2009 I woke up with a large painful bump on my left shoulder blade and a bloated stomach. I was in a lot of pain and the pain and swelling just kept growing every day. My parents brought me many times to the doctors, and hospitals before someone finally figured out the bump is not just a bump, I had something worse. I was diagnosed with an ultra rare condition called Fibrodysplasia Ossificans Progressiva (FOP), which means my muscles, joints, and ligaments are tuning to bone. I never heard of this before and neither did my parents, I was kind of scared and in shock.
I also never knew that when I woke up that day with the painful bump that I would not be able to play like I did before. Now I have to be careful not to get bumped, bruised, stretch my muscles, or even fall because that would speed up my loss of muscle and replace it with bone, making it impossible for me to move that area of my body ever again.
My neck, back, and chest are stiff because of FOP and instead of having muscle there, I have bone. I cannot turn my head sideways, look up, or down because my neck muscles have turned to bone making it impossible for me to see what is above, below, beside or even behind me without turning my whole body around. When I breathe my chest does not move because the muscles have turned to bone, I breathe only with my stomach. My arms are stiffening to my sides and I can only move them slightly to reach items. I am happy I can move my elbow really good and my knees! My hips have been hurting for a long time now and I fear that one day I will wake up and not be able to move my legs any more.
I need to use my electric wheelchair now because I find it very tiring and at times very painful to walk. FOP is gradually taking my freedom away and I always have to struggle to find a method or creative a way to regain what I can back. Please help me do this!
I would really love to be independent again and be able to drive my electric wheelchair everywhere, like into the van and where ever we go.
I know my parents know best and to me my parents are the best ever! I am so glad I have them and I know that they are having a hard time finding and buying items I need daily, but my parents are creative and have made a few things themselves. But they can’t modify the van themselves and it will cost a lot of money. This is one of the places that I am hoping to raise money for! If there is any extra money donated, then I am hoping for the dream of a modified bedroom and washroom, so I can be free to be me!!
One year ago, our 10 year old van was struck from behind, my family was devastated! My parents were forced to buy a new van. The van they bought can be modified to allow me to drive my electric wheelchair into it. But, my parents spent all their money on it and can’t afford to modify it right now. I saw my mom’s face when she found out how much it would cost to modify the van, I felt so sad for her and I know she has been spending a lot of time trying to come up with money to modify it. I am not sure how I can make things right.
But I do know I need to get my electric wheelchair to go with me so I can move around on my own and not have to slow my parents down so much. I can only walk short distances then I need to rest. Sometimes I get too tired to continue and I am not even finished our outing. Usually, I say I don’t want to go out with them because I see how hard it is for my family to bring me along. But, my parent always make me come anyway which I am glad. I want to do something nice for my parents as they have done for me.
Please if you can help me raise the money to modify the family van I would appreciate it so much! I am not sure how much it will cost, but I believe I heard it would cost around $26,000. Mom and Dad if you see this post, I love you and hope this helps! Love your son James
Organizer
James Dizon
Organizer
Richmond Hill, ON