Surgery Number Nine Planned For Little Boy With Rare Disease

Friday, August 31st 2007, 5:04 pm
By: News On 6

A little boy is facing yet another surgery to deal with a rare disorder. The News On 6’s Emory Bryan reports he was born with extremely stiff joints and low muscle strength, a disabling condition that his parents want other families to know about.

Just looking at 2-year-old Connor, it's hard to see the extent of his problems, until you see where he started. As a baby, his arms could not bend and at birth his feet were turned severely inward.

"He was disfigured and had congenital abnormalities, all these words you never want to hear about your child," said Connor’s mother Amy Duncan.

The diagnosis was Arthrogryposis Multiplex Congenita, called AMC. It's a disorder that basically means locked joints. The problems start when babies can't move in the womb.

"When your joints don't develop correctly because they can't move, your tendons don't get stretched, and your muscles don't get used so you can have absent muscles or underdeveloped muscles," Duncan said.

It affects Connors right side more than the left and his arms more than his legs. He is able to walk some now, with assistance, but that's only because he's had extensive physical therapy, and eight surgeries. He'll need more operations and daily therapy for the rest of his life.

"Before he had his surgery on his arms they wouldn't bend, so he would go like this to scratch his face because he couldn't do this or he would walk up to me and rub on my shirt to itch his nose,” said Duncan. “They figure out how to do things in a different way then we do."

Duncan has met with families dealing with AMC in other states, but the rarity of the disorder means it's hard to find support or proper advice and treatment. She's hoping that her experience with Connor will encourage families who get the diagnosis to not give up before they see the potential for treatment.

Connor will have another surgery next week on one of his hands, to improve his grip, and we'll have a report on how that surgery goes.

For more information on Arthrogryposis Multiplex Congenita, click here.

Watch the video: Toddler Battling Rare Disease