Team Katie AMC 2014

Team Katie AMC was founded in 2013 to raise money to help familes who are affected by AMC. AMC stands for Arthrogryposis Multiples Congenita. Arthrogryposis is a general or descriptive term for the development of nonprogressive contractures affecting one or more areas of the body prior to birth (congenitally). A contracture is a condition in which a joint becomes permanently fixed in a bent (flexed) or straightened (extended) position, completely or partially restricting the movement of the affected joint.  The most common form of an isolated congenital contracture is clubfoot. When arthrogryposis affects two or more different areas of the body, it may be referred to as arthrogryposis multiplex congenita (AMC). The most common form of AMC is amyoplasia. Arthrogryposis and arthrogryposis multiplex congenita are sometimes used interchangeably.

The symptoms of AMC are present at birth (congenital). However, specific symptoms and physical findings can differ greatly in range and severity from one person to another. In most cases, affected infants have contractures of various joints. The joints of the legs and arms are usually affected, the legs are affected more often than the arms. The joints of the shoulders, elbows, knees, wrists, ankles, fingers, toes, and/or hips are also commonly affected. In addition, the jaws and back may also be affected in individuals with AMC. In most cases, AMC occurs randomly, for no apparent reason (sporadic). More than 400 different conditions can cause isolated or multiple contractures and the causes, genetics, specific symptoms, and severity of these disorders vary dramatically. Over 125 genes have been identified as responsible for different types of arthrogryposis. AMC is considered an "Orphan" condition by the National Organization of Rare Disorders Inc (NORD) because it affects less than 200,000 people in the USA. With a population of 313 million people in the US, there are only 104,000 persons with AMC. This number does not include babies who do not survive infancy, It is estimated that 20 percent of children born with AMC will not survive childhood. Although there is no prenatal testing for AMC, different characterics of AMC, such as club foot, can be detected by ulltrasound. However, some parents have no idea that their babies have AMC until birth.

So who is Team Katie AMC? Team Katie is our youngest daughter, Mary Katherine "Katie", who was born at 36 weeks on November 6 2010. We went into our c-section thinking that everything was perfect, so it was a shock to wake up and find out that our long awaited baby had "something wrong but we don't know what it is." Katie had bilateral clubfoot and a dislocated right hip. We went from wondering who she would look like to praying that she would be able to walk someday. Our world was turned upside down.

Thankfully, we have a great support system with our friends and family who helped us those first few months, when we didn't know how we would buy gas to make the weekly drive from West Virginia to South Carolina for Katie's treatments. But there are so many families who have no support when they find their world turned upside down, so our family wants to pay it forward and help children like Katie and their families. We hope to provide anything that will make their life a little less stressful as their child goes through weeks of treatments....years of treatments.....We want to provide everything from gas cards to restaurant gift cards to special equipment like Hippo car seats that start at $300 each to a special blanket that will bring our special babies a little comfort. But we can only do this with your help!

Buy your Team Katie AMC 2014 shirt and wear it on AMC awarness day, June 30. 100% of the funds raised go to helping families and children affected by AMC.