Arthrogryposis is a general or descriptive term for the development of nonprogressive contractures affecting one or more areas of the body prior to birth (congenitally). A contracture is a condition in which a joint becomes permanently fixed in a bent (flexed) or straightened (extended) position, completely or partially restricting the movement of the affected joint. Please read more at rarediseases.org or amcsupport.org

He's doing great! He has a lot more appointments than most little guys his age, but he seems to like the attention and his providers adore him. He gets lots of exercise and stretching from his therapists and parents on a daily basis. While the stretches provide sensation, they do not seem to cause him pain. We definitely make sure to incorporate as many games, songs, and fun into his routine as well.

In many ways, Louis is not different from other toddlers! He can play, laugh, scream, cry, and say "no!" with the best of them. Louis is showing us new things he can do on a daily basis, and intellectually, he's a bright little guy. When it comes to his physical abilities, Louis's limited joint mobility prevents him from doing some things like a typical toddler (e.g., walking, touching his face, and moving through transitions like laying to sitting and sitting to standing). Luckily, his physical and occupational therapists help his parents to create modifications so he can still hit these developmental milestones.

In short, we do not know the answer to this question. However, it is his parents' goal to give Louis all the tools he needs to make him as independent as possible. Other kids with arthrogryposis have been able to achieve these objectives through various interventions. So far, Louis has figured out how to roll over, scoot around on his bottom, cruise along furniture, and feed himself with the right food and adaptive utensils. We are very hopeful that Louis will be able to meet these goals in his own way and on his own timeline.

Louis loves swimming in the pool, swinging at the playground, and reading books. He is especially interested in cars and trucks- whether it's playing with them as toys or naming all the vehicles he sees on a walk or car ride. His parents look forward to watching his interests develop further over time.