What is Arthrogryposis?

Welcome to the our site! This site was created to keep friends and family updated about Lia's Journey and triumphs over AMC.

So what is Arthrogryposis ?

Arthrogryposis, also known as Arthrogryposis Muliplex Congenita or AMC is a rare disorder that is present at birth (congenital), is characterized by reduced mobility of many joints of the body. Impairment of mobility is due to the overgrowth (proliferation) of fibrous tissue in the joints (fibrous ankylosis). There are many different types of Arthrogryposis Multiplex Congenita and the symptoms vary widely among individuals.

The word Arthrogryposis when broken up in Latin, literally means "Curved Joint Disease"

Arthro - Joints

Gryp - Curved

Osis - Diseased or Abnormal Condition

AMC means:

Arthrogryposis - Curved Joint Disease

Multiplex - Multiple Parts

Congenita - Evident at Birth

Lia was born in Qingdao, Shandong China. She came home to our family, her forever family, on March 5, 2011. After coming home Lia was formally diagnosed with the Amyoplasia type of Arthrogryposis Multiplex Congentia.

Amyoplasia literally means

A-no, without

Myo-muscle

Plasia-growth

In the Amyoplasia type of AMC the anterior horn cells that would make up all major muscle in Lia's body somehow got disrupted and stopped forming early on in the womb. As of today we have no idea what causes that, nor is anyone close to finding out. All four of Lia's limbs are affected by AMC but she wants everyone to know that she is smart and AMC only affects her "bones and muscles". I'm amazed daily at her determination to do everything and not to let AMC stop her. She is an intelligent and extremely happy little girl with a ready smile capable of doing may things that often surprise us all. She has taught us all many times to NEVER say never and to always think outside of the box.

The videos below will help you learn and understand more about Arthrogryposis and living with AMC. They were filmed by Margaret Chaidez, another mom who has a child with Arthrogryposis.

We travel to Philadelphia to have our daughter treated by Dr. Zlotolow and Dr. VanBosse, the man in the first film. Maybe now it will be clear why we and so many others travel to see him from all over the world.

Dr. VanBosse explains AMC:

https://vimeo.com/24626314

The Sweetest Gift: Living with Arthrogryposis:

https://vimeo.com/24627082

Easter EGGS!!!

Who knew coloring water could be so much fun! Note to self We could have stopped right there.

Finally the eggs are boiled!

READY. . . .SET. . . .GO!!!!!

Ahh Emily. My creative child. You did such a beautiful job on your own hairstyle and I

LOVE your blue nails. No need to polish those puppies.

My perfect children take turns so nicely.

Yep this is pretty much how they usually take turns =)

Concentrate. . . concentrate. . . Don't DROP the EGG!!!

Emily likes to draw on her eggs.


Nathan does too!


Finished product all ready for the Easter bunny.

Picture opportunity.

Emily: "Mommy is this going on Face Book?"
LOL Too funny


Ryan:"mom these eggs smell pretty"

Mom: "mmmm yep that's vinegar buddy"

Note to self. . . . help Ryan pick out perfume for his future wife=).


Why I oughtta. . . .



Emily said "The little guy has to eat too!

Sunday Snapshot

So I finally decided to take the time and do a Sunday Snapshot. Since this is my first sunday I thought I would write about "family life".

Most of the time you can find us outside.

With views like this from our back porch can you blame us. We live on the river so most days we can be

found.

  

Ahh summer. . . . . . We MISS you! 

Wordless Wednesday

We LOVE you LIA!!

Fun in the "Sun"

I'm not sure who had more fun........