It’s amazing the things that he gets done
JT’s easy, he’s awesome, actually. It’s amazing the things that he gets done with all the complications he has. He moves around, he gets to where he needs to go, he crawls, he’s pulling to stand. Give him a couple months, and I’m sure he’ll be walking around. He’s great. He’s wicked smart; he’s a good boy. I can’t imagine; he’s been through more than I’ve been through ever, in these two years. You would never know it if you met him on the street or anywhere but the hospital, you wouldn’t know that he’s in as much as he is. He’s got a good personality, he’s pretty good.
Mother of JT, toddler, CLOVES syndrome
We start the day off like every other average family
I wouldn’t say complication, but the only thing different out of the norm for us is she has to get up a little earlier and my wife has to put the sock on in the morning. Other than that, we start the day off like every other average family does, you know, wake up, breakfast time, get ready for school, get ready for work, and that’s it. But no, no complications at all.
Father of Erin, child, Klippel-Trenaunay syndrome
She’s more aware of things
As she grows it tends to grow with her so she’s had some new growths show up; they just removed a growth that’s been on her thigh. It wasn’t there when she was born and it wasn’t there for quite a while, but in the last two years it’s caused quite a bit of pain and discomfort, so they were able to remove that. As she’s gotten older, the bleeding has become less of an issue, partly because she’s aware of it and so you find out about it faster because she notices it and also because she’s now aware that scratching or itching can cause that bleeding. So that’s been a change… She’s more aware of the things. If she’s bleeding, often times she can take care of it by herself now. She can get the Band-Aids, she can put it on, she can take care of that. There are still times where it’s a bit more than she can handle, and she’ll yell for help, but there’s times where she comes out of the bathroom and says, “I just had a bleeder and put a Band-Aid on.” And I’m like “are you ok?” “Yup.” “Ok.” And she’ll go on her own.
Father of Natalie, child, Klippel-Trenaunay syndrome
She completely, 100% normal
She’s completely, 100% at the normal, right level for her age and has been for some time. Once potty training happened then we didn’t have to address the skin issues, she’s had no alterations to a normal schedule in life. It hasn’t really impacted our day to day life at this point.
[Later] I mean we thought from the beginning that she may be teased in school, because the size was obvious in pants, it was obvious that there was a big difference in size from one buttock to the other. So we were concerned that we’d have to do liposuction or some kind of plastic surgery even if the hemangioma went away completely, because of the fat deposits that it leaves. And I don’t believe we’re going to have to do that, I haven’t measured anything, but we’re amazed at as she’s growing taller and stretching out, how much it isn’t noticeable, in a bathing suit, in anything.
Mother of Melissa, child, Reticular hemangioma
He’s very open about it
I’m totally fine with talking to him about his health. His doctors has said that there was a very rare and slim chance that it will come back or anything, but I mean we’ve talked about it, especially for a while after his last surgery. We kept having to deal with the little infections on one area, and then we’d have to keep his head wrapped. That became a little frustrating because we thought we were done with it and then it kept coming up. Once we got past that post-operative recovery time, basically now it’s not really an issue. I check that area every once in a while, but Derek is one of these that is on the move so much, “Okay, okay, okay, hurry” He doesn’t have time to think, he’s ready to go, so he doesn’t like to talk and take time too much for much of it, but if I do sit and talk with it, he’s very open about it. He was very open about it the entire time he went through it.
Mother of Derek, child, Kaposiform hemangioendothelioma
It’s our normal
He’s been really happy and healthy and learning and thriving and his weight and everything. Early on his weight was an issue, he was so thin, so it was always trying to fatten him up. He’s still really tiny but the day-to-day life is great, it’s our normal, you know, it’s our normal. So yeah, I don’t really have anything, I wish I had something to share!
Mother of Matt, child, Lymphatic malformation
We probably are a little more lenient with him
Mom: I am a stay at home mom, so if he’s hurting and I have stuff to do that day, we’ll try to reschedule it, and we’ll just have a movie day, and that kind of turns him around a little bit.
Dad: We try not to spoil him. But you can’t help but to give in more than you would.
Mom: We probably are a little more lenient with him.
Dad: Well I know I am.
Mom: Yeah, he is especially. More lenient with him than we are with our other children. It’s not on purpose, it’s just that it’s hard to see him go through all that and then be super tough on him. Not that we’re super tough.
Dad: We’re pretty strict, but we give a lot when he doesn’t feel good and stuff like that.
Family of Michael, child, Blue rubber bleb nevus syndrome
It’s just amazing
It has been really good. I mean, how she’s doing so far, it’s been crazy amazing. She’s had a lot of surgeries–surgeries and procedures add up to be 20. But what she came from, the way she looks from when she was born to the way she looks now is just completely amazing. You would have never thought she would look so completely normal and be able to do what she does. Because she is so strong and she dances and she’s just fine. It’s just amazing.
Mother of Annabelle, child, Lymphatic malformation