From a child's mouth...
This was a paper written by my daughter when she was in 4th grade for a report. She wrote about herself and her thoughts at that time. It speaks for itself.
I was born with a disease called Arthrogryposis. My mom had to have a c-section when I was born because the doctors knew I was probably going to be disabled and it was the safest way for me to be born. I had to stay in the hospital for three weeks until the doctors knew I was strong enough to go home.
Arthrogryposis is a fairly rare disease. It comes from a Greek term which means hooked or curved joints. The joints become very stiff and form contractures. Muscles become weak and don’t develop the right way. All the joints in my body have been affected by it. I can’t hold my head up because my muscles are too weak. I am not able to move my arms or legs very much. I can’t run or walk and need to be in a wheelchair to get around.
Most of the time Arthrogryposis doesn’t occur again in the same family. It usually isn’t a genetic disease but it can happen about 30% of the time. I was the second person in my family to have it. No one is sure what causes it.
It is hard to be disabled because I have to depend on other people for help. I would love to be able to scratch my own nose or brush the hair out of my face by myself. I would love to go on rides at Valleyfair. I wish I could run around and climb ladders because it looks like fun. I can’t do those things though and that is okay.
I love my wheelchair because it makes my life easier. It has a tray that I put stuff on and I can play. It can be hard to go places because my chair doesn’t fit everywhere. It is hard to visit people’s houses since most houses aren’t easily accessible. There are a lot of places that aren’t wheelchair friendly.
My family has made my house and van accessible for me so I can be comfortable and get around easier. We have a full size van with a lift in it for my wheelchair. Our house has a ramp in front so I can get in the front door easily. The most exciting and fun part of our house is the platform lift that I can ride to get into our basement where we made a new family room.
Sometimes it seems like people might be afraid of me because I am in a wheelchair. I was born with a disability but it doesn’t make me any different from anybody else.
I was born with a disease called Arthrogryposis. My mom had to have a c-section when I was born because the doctors knew I was probably going to be disabled and it was the safest way for me to be born. I had to stay in the hospital for three weeks until the doctors knew I was strong enough to go home.
Arthrogryposis is a fairly rare disease. It comes from a Greek term which means hooked or curved joints. The joints become very stiff and form contractures. Muscles become weak and don’t develop the right way. All the joints in my body have been affected by it. I can’t hold my head up because my muscles are too weak. I am not able to move my arms or legs very much. I can’t run or walk and need to be in a wheelchair to get around.
Most of the time Arthrogryposis doesn’t occur again in the same family. It usually isn’t a genetic disease but it can happen about 30% of the time. I was the second person in my family to have it. No one is sure what causes it.
It is hard to be disabled because I have to depend on other people for help. I would love to be able to scratch my own nose or brush the hair out of my face by myself. I would love to go on rides at Valleyfair. I wish I could run around and climb ladders because it looks like fun. I can’t do those things though and that is okay.
I love my wheelchair because it makes my life easier. It has a tray that I put stuff on and I can play. It can be hard to go places because my chair doesn’t fit everywhere. It is hard to visit people’s houses since most houses aren’t easily accessible. There are a lot of places that aren’t wheelchair friendly.
My family has made my house and van accessible for me so I can be comfortable and get around easier. We have a full size van with a lift in it for my wheelchair. Our house has a ramp in front so I can get in the front door easily. The most exciting and fun part of our house is the platform lift that I can ride to get into our basement where we made a new family room.
Sometimes it seems like people might be afraid of me because I am in a wheelchair. I was born with a disability but it doesn’t make me any different from anybody else.
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