Arthrogryposis Multiplex Congenita

That is a mouthful. Around our house we call it AMC or Arthro for short.  Those three words affect 1 in 3,000 births by U.S. statistics with European numbers being closer to 1 in 10,000.  In Latin AMC literally means curved joints having effect in multiple areas of the body from birth.  It is not progressive and will not worsen over time.  It is a spectrum of sorts as some children are more effected by AMC than others, especially if they are diagnosed with amyoplasia. Kiddos with AMC may have other health problems with their nervous system , muscles, heart, kidneys, and other organs.  Tragically nearly half of the babes born with AMC do not see their second birthday.

Our two eldest kiddos, Ben and Jasmine have AMC.  And its effects can be seen in so many aspects of their lives.  When we first met Ben in China we were amazed at the things that he could do.  His arms and knees didn't bend and his hands were Aguilar like resulting in limited functionality of his fingers.  Yet this amazing boy had figured out how to feed himself, walk, and drink from a cup.  He has been home for three years and the progress that he has made is incredible! Ben can now get himself dressed independently! He wears braces on his feet during the day and braces on his hands at night.  Ben had surgery to fix his arm into a bent position whereas it had been rigid and straight to give him more functionality.  He also brushes his own teeth and can manage bathroom situations by himself, save washing his hands.  And we are currently looking up ways to help him achieve that independence as well.  

Jasmine has Arthro and bilateral club feet, and sadly those two conditions work against each other.  She wears massive leg braces during the day that hold her feet in the proper angle and help to keep her toes from externally rotating.  The braces connect from her toes all the way to a belt that secures around her waist with metal bars on the outside of her legs.  She had surgery at three months old and has been in braces ever since.  She didn't crawl until she was 18 mos and began walking at 2 years.   

Throughout everything that these two have been through their tenacity, spunk and refusal to give up amazes me. We rarely hear "I can't do it." pass their lips.  Their smiles and genuinely cheerful nature are such a blessing! It is my great joy to parent them!!!!  

Today, June 30 is Arthrogryposis Awareness Day and as a family we are wearing blue to raise awareness of this condition.  I even went Pinterest crazy and made our family matching shirts for the occasion.  And yes, I will be posting pictures of us in our blue garb later on in the day. 

If you would like to learn more about AMC I would encourage you to visit www.amcsupport.org  

 

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Jessica BittnerComment