Understanding Arthrogryposis Multiplex Congenita from margaret chaidez on Vimeo.

The above video will help you understand about arthrogryposis. If you have just had a child diagnosed with this, or if you are simply curious, watch the video! It was filmed by Margaret Chaidez, another mom who has a child with arthrogryposis. We travel 3,000 miles to have our daughter treated by Dr. van Bosse, the man in the film, and now you have an idea why.

And by the way, welcome to the our site! This site was created to keep friends and family updated about our Laelia, although it’s turned into more than that.

Laelia Sky was born at 1:27pm on October 3rd, 2007. She weighed 7lbs and 2 ounces. She was diagnosed with Amyoplasia Congenita Disruption Sequence, a type of Arthrogryposis Multiplex Congenita, the morning of October 4th. That means the anterior horn cells that would make up all major muscle in her body somehow stopped forming early on in the womb. Also all the joints in all four of her limbs had contratures causing her to not be able to bend her fingers, elbows, knees, etc. As of today they have no idea what causes that, nor are they close to finding out. Some guess it’s lack of amniotic fluid, a vascular accident or even just a miscommunication between the parts of the body when they are forming. The head geneticist on the case is Dr. Judith Hall who we’ve also traveled to see. She confirmed our diagnosis of amyoplasia and assured us in her gentle way that we did nothing to cause this.

Arthrogryposis simply means having joint contratures. Amyoplasia literally means a=no, myo=muscle, plasia=growth. This condition only effects my daughter’s physical body. She is a super smart, articulate little girl who I am happy to call my own. I hope you enjoy her adventures as she discovers her world in a way that’s a little different than the typical child. And I hope everyone reading this becomes a little more aware of arthrogryposis which effects 1 in 3,000 births. Or really I’d just be happy if my blog’s own spell check knew it was a word. Ah, one step at a time.