AMCSupport.Org

Little Louie's condition is called Arthrogryposis Congenita Multiplex. His specific diagnosis is Amyoplasia.

When Louie was first born no one could tell us what was wrong with our son, what caused what he had. In a time that was meant to be a joyful experience was darkened not because our son was born with an unknown muscular condition but because we had no answers, so many questions but no where to go to for help. It wasn't until he was 2 weeks old when we went to the Children's Hospital in St. Louis where he was diagnosed. Although we felt so much better just knowing what we were dealing with, we still had no where to turn to for help, for advise, for someone who knew what we were feeling, thinking, going through. I remember doing an on-line search and found a beautiful little girl named Abby who was born with the same condition. Her parents had a website dedicated to her , her condition, her progress, with pictures. For the first time I was able to see that we, including our little guy were not alone. There was a website that I was given that was known to be for those with Arthrogryposis. I tried to access any type of information I could, to no avail. So I gave up and stopped searching on line. In Oct of 2005, as Louie's 1st birthday approached, I did another search and found amcsupport.org.
It's an online support group of families and friends or people with Arthrogryposis, founded by the mother of little Abby. Currently there are 200+ members and I remember when I originally joined there were not even 100 members. We come together discuss our children, vent our frustrations, listen to others who face or have faced what we have. We offer unconditional support to anyone who needs it. I can't tell you how wonderful I feel being part of such a wonderful support group. Knowing that this is here for other new parents, hearing them echo my same concerns and questions and frustrations. Not only have I met other parents, but I've also met some of the most amazing adults with Arthrogryposis. Some of the most inspiring stories have come from these adults who like my Little Louie have overcome and endured so much.
In August of 2006 we will have our first ever convention. This is not just AMCSupport's first convention but this the first known convention for those affected with Arthrogryposis Multiplex Congenita. I invite you all to go to www.amcsupport.org. We welcome anyone who has family or friends with Arthrogryposis. We're also asking for donations to help pay for some of the expenses of this convention. I have the honor and privledge to be one of the people who are organizing this momentus occcasion, and I just ask, if you can to go to the website and donate if you can. Without them I wouldn't know where I'd be today.