Friday, February 20, 2009

This is Evan.

Evan was born with a condition known as Arthrogryposis Multiplex Congenita. The word "arthrogryposis" comes from the Greek derived "arthro" (joint) and "gryposis" (crooking). The terms "multiplex" (multiple or many) and "congenita" (existing from birth) are Latin derived. Losely translated, the term Arthrogryposis Multiplex Congenita means "many crooked joints at birth."

Arthrogryposis occurs in 1 out of every 3,000 births and and is a term used to describe more than 150 different syndromes and conditions. The most common form of arthrogryposis is amyoplasia (this is the form of AMC that Evan was born with). Amyoplasia is a generalized lack of muscular growth and development.

Arthrogryposis effects each individual differently. Joint contractures may be present in all of the joints (arms, legs, hands, spine, jaw, etc.) or may only effect some of the joints (in some individuals, only lower extremities are effected, in others, only upper extremeties. In some cases, a single joint may be effected). Contractures are generally divided into two categories. Flexion contractures describe joints that are locked in a bent or flexed position. Extension contractures describe joints that are locked in a straight or extended position. Both limit range of motion or joint mobility. It is also common for individuals born with arthrogryposis to experience severely clubbed feet and/or some degree of scoliosis (although this is not always the case).

How Evan is effected

Evan was born with amyoplasia, the most common form of arthrogryposis. As defined above, amyoplasia effects muscle growth and development. As a result, Evan is missing the majority of the muscle in both of his arms. Because the mucles in his arms are absent, he has no active movement in his hands (is unable to move fingers or grip with his hands) or arms. All of the movement in his arms comes from his shoulders. Both of his arms are in flexion (they are locked in a bent position). Evan was born with severely clubbed feet which have been corrected surgically and with additional serial casting. His legs are also in flexion (they are both locked in a bent position). He currently wears KAFO's (Knee Ankle Foot Orthotics aka full leg braces) to maintain the correction of his feet, straighten (as much as possible) his knees and provide support for weight bearing. Evan's hips are also externally rotated.

Evan received no therapy or medical intervention prior to joining our family in December 2007 (he was 3.5 years old). When he came home, he was unable to sit unsupported and had very little use of his arms and legs. With therapy, bilateral clubbed foot surgery, serial casting, bracing and lots of hard work, Evan is now able to sit without support (and is working very hard to get from laying to sitting on his own), can bear weight on his legs and walk with assistance (using a walker, gait trainer or mommy). Moving from his shoulders, he is able to pick things up by sliding objects between his fingers or pushing the backs of his hands together. He can also use one hand (usually lefty) to assist the other in turning the pages of a book and is working on learning to use an adaptive fork and spoon (the curved utensil is attatched to a cuff around his wrist, he "scoops" by moving his arm from his shoulder and gets the utensil to his mouth by leaning forward slightly and using his opposite arm to support the arm holding the utensil). He uses his mouth to paint, color, sort, point and use the computer (with a mouth stick) and play with his matchbox cars.

Evan has come a long way since joining our family and has shown us that he has limitless potential. He still has a long way to go, but we know that he can and will accomplish anything and everything that he puts his mind to. In short, Evan is a pretty amazing guy!

To learn more about Arthrogryposis go to AMC Support or follow the links on the sidebar.


MichelleNickel said...

Evan is amazing; Kayla and I love him so much. You are a very special family to us. You are all in our daily prayers. We will be thinking about you all on Tuesday and will be looking for some updates on Evan. Kayla will miss him in class the next couple of weeks. We hope to see you before you leave!

Lindsey said...

What an amazing kid he will go far in his life maybe become an artist.Im 18 now and i also have arthrogryposis. i think its cool to know someone that wrights and paints with there mouth like me.i have faith in him.