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:
The Sweetest Gift: Living with Arthrogryposis:
