My son is also called Ethan, he is 8 & has the same condition. We live in Wales in the UK & the Dr's are finding it hard to treat. His leg causes sever pain & locks just like Ethan on this article & his leg is also very weak due to muscle wastage. The vascular malformation in my sons leg has also caused leg length discrepancy. This story brought me to tears, this boy is so brave! Please if anyone could offer me any advice or help it would be greatly appreciated! My email is symone238@btinternet.com

By the way it sounds this boy MIGHT be slowed down during recovery but with an attitude like his, his parents better watch out when he gets his prosthetic because he will be making up for lost time from having his bad leg.

bonnie, they tried removing it but it keeps growing back every time.

Bonnie, considering that Ethan is a patient at UCLA, I have no doubt that the doctors there have checked and double checked every other possible cause. No doctor would every consider removing a childs limb without every other option/cause being ruled out. I also believe that his parents would never allow something like this to happen without allot of research on their own. As for Ethan, I want to meet this young man one day. I want to shake his hands and I want to tell his parents that they have done a magnificent job raising their son. They should be more then proud! I see nothing but success for Ethan as he grows into a man.

I have serious doubts that Ethan's anomaly is an AVM. An AVM is simply a birth defect which causes the arteries and veins not to break down into smaller capillaries and arterioles. In 1986, I had an AVM removed from the temporal lobe of my brain. The surgery was intense but I recovered. If poor Ethan has an AVM in his leg, why isn't it surgically removed?