Rare disease puts 10-year-old girl in wheelchair
Posted: Jun 18, 2012 11:35 PM EDTUpdated: Jun 19, 2012 11:21 AM EDT
JONESBORO, IL (KFVS) – The Tweedy family’s life was turned upside down three months ago. That’s when their 10-year-old daughter was diagnosed with Complex Regional Pain Syndrome.
The disease an uncommon form of chronic pain that usually affects an arm or leg.
In Ashlin’s case it’s affected both of her legs and feet. She can no longer walk and must rely on a wheelchair to get around.
“I used to hang out with my friends and go places. But now I can’t do that,” said Ashlin.
The disease is also causing Ashlin to suffer extreme hot and cold flashes throughout her body.
It’s really changed the families day to lives in ways they never could imagine.
“She has a very bad case of it, she’s been hit really hard,” said Rhonda Tweedy. “It’s very scary to know that your child is okay and then in less then a month they can’t walk. That’s a lot of shock to absorb.”
It’s a lot for her dad Rodney to get adjusted to in how he spends time with Ashlin.
“When you get used to coming home and playing with your kids everyday, or like going to watch her play soccer,” said Rodney Tweedy. “Now when I come home usually the first thing I do is I have to pick her up and take her to the bathroom, because she can’t go to the bathroom or anything. She can’t put on her clothes, her mom has to help her. So it’s changed our lives completely.”
Even in her constant pain Ashlin can still find ways to smile and try to forget about her situation. She never knows when the next surge of pain is going to hit her.
“I don’t know when it’s going to happen, how long or what’s going to happen it just happens,” said Ashlin. ” I try not to scream and wake up my mom at night because I’m in a lot of pain. I don’t want to wake her up and disturb her sleeping. I just want her to get her sleep.”
Now it’s going to be one day at a time for the family and for Ashlin.
“It’s not easy by no means. Rhonda takes care of Ashlin and I take care of the bills and keep the other kids going. And the bills just keep mounting up.We’re just about to lose everything trying to get Ashlin to where she needs to be to the help she needs,” Rodney said. “I have a wonderful wife and we’re just a family pulling together here trying to just survive. And get Ashlin back on her feet.”
Which the family will begin working on next week at the Mayo Clinic in Boston, Massachusetts.
The Saint Louis Children’s Hospital was able to diagnose Ashlin with Complex Regional Pain Syndrome, but the hospital was unable to provide her with any treatments.
The cause of Complex Regional Pain Syndrome isn’t clearly understood. And fewer then 2000 kids a year in America are diagnosed with the disease.
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