my son was born with arthrogryposis on 5 march 2009. I have 2 sisters with arthrogryposis and 1 brother, but he passed away at 18 yrs of age, he had it very severe and other problems like severe asthma. My sisters less severe, very independent, just can't bend their knees, elbows fully and can't straighten fingers. My son is very similar to my sisters.

We are going to the limb clinic in Sydney childrens hospital and seeing genetics docs in Rpa hospital as they are a bit puzzled how my son got it if I am perfectly healthy. They have not found the gene for this condition and they think possibly I was carrying the gene and you only need one copy to get the condition

We are doing physio and some splints for his hands. No talk of surgery. Mysisters are 25 and 18. They had surgery on hands 10 yrs back but was unsuccessful. My son also has right droopy eye lid so getting his eyes checked every 3 months.

As you can imagine my parents have plenty experience as 3 kids have arthrogryposis

Will write more when I get more time.