Leri Pleonosteosis

We have seen and/or contacted doctors up and down the Northeast coast. It is frustrating that not only can we not find a doctor who has seen a case of Leri Pleonosteosis, we only found one doctor who has even heard of it! Every doctor says the same two things: "How do you spell that?" and "There's nothing we can do." I still have a hundred questions and it seems no one wants to find the answers. "I don't know" is hard to swallow when your husband and son both suffer from the same disorder.

I would travel anywhere in the world to find a doctor who has seen a case of this, but as it stands, we are told they are the only known people alive with it within the United States, if not the world.