As some of you know, Joe-Henry was born with a rare syndrome called Klippel-Trenaunay Syndrome. It's causes are unknown, and there is no cure. We are incredibly fortunate in that his case is relatively mild, and while he has bouts with cellulitis from time to time, he is very healthy and on the go.
We have not needed much in the way of "treatment" for JH. Just some compression stockings so far (that he hates wearing and for the most part refuses). In the next year or so, it is my hope that we can have him followed more closely, because with adolescence there is a lot of growth, with growth there can be complications. But as long as he's mostly symptom free, we don't want to do much. It is usually something he has to explain from time to time, which he is brief and confident about: "I was born with it." It certainly doesn't define him, but it has had a big effect on the person he is. He is one of the more compassionate kids I know, and he is maybe the last one to notice if someone is "different" from him. He is confident and strong and funny and talented. He used to play guitar and mandolin and has informed us that he wants to focus on the piano and drums right now, but he might pick up the guitar again when he's a teenager. Or maybe ten. He loves school and riding his scooter and swimming and math. He reads 198 words per minute and can appreciate other's strengths and his laugh will get you through a bad mood in a hurry.
Oh, and he has something called K-T.
This link was emailed to me from someone on the K-T listserve. Children's Hospital in Boston is one of the few places that has done research and treated many K-T patients (the other being the Mayo Clinic in Rochester, MN). It's really informative, so if you're interested, read on....
2 days ago