She could probably do everything that her older sister can
Gabriela is a very, very resilient child. She just has one of these personalities that nothing’s going to hold her back, so she rides a bike, she climbs. Gabriela could probably do everything that her older sister can. She’s not physically impeded in any way at all. She does have a gait, and she does have leg length discrepancy—one of her legs is longer than the other, her affected leg is longer—and that’s going to have to be addressed at one point in her life. The orthopedist is going to be addressing that, but she does have a gait when she walks, and it’s mainly due to that because there’s a leg length discrepancy.
Mother of Gabriela, toddler, Klippel-Trenaunay syndrome
He’s still too wobbly
He was 2 before he walked, but once he started walked, he’s never had a problem with it. I mean, he’s not as steady as most children his age, and he has to hold on with steps where I’ll see some of the other kids at school jumping down the steps and stuff like that. He can’t do that because he’s still too wobbly, but like I said he doesn’t know there’s anything different about him.
Mother of Cooper, child, Klippel-Trenaunay syndrome
She has trouble moving around
Keeping up with other people, I mean that’s always an issue… She has trouble moving around. Even recess at school, there’s a long walk from the lunch room to the recess and then back to the classroom. The students normally go basically around the whole school by the time they get back, and so most of last year she didn’t get any recess because by the time she got out there it was time to go back in, and then there’s the long walk. They’ve arranged for her to be able to cut through some areas which has made a difference. We do have a wheelchair; she doesn’t take it to school, but if we do anything that we know has a long walk, like going to a zoo or the mall or anything like that, we will take the wheelchair because she fatigues quickly during those times. If you struggle with her to get her into the place and walk from the parking lot in, she’s already tired, she’s not going to enjoy whatever you’re doing. We’ve also gone with on field trips, and taken the wheelchair, some of the walking field trips because again, you want her to be able to do the field trip, not just struggle to be there.
Father of Natalie, child, Klippel-Trenaunay syndrome
He’s getting very heavy
He does get tired, I think just from the nature of what’s going on, his muscles get very tired. The muscles are also affected by the veins because some of them are intertwined within the muscles. He doesn’t have any problems walking short distances or playing, recess or whatever but we notice if he’s been on his feet for a long time, and even if we go out to the store, after 10-15 minutes or so of continuous walking, he does get very very tired out. He wants to be carried and now he’s getting older and he’s around fifty pounds and he’s getting very heavy. [laughs]
Mother of Liam, child, Glomuvenous malformation