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Old 04-17-2004, 09:20 PM
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Default A little worried?

Hi im new to this forum. My husband and i have taken on a large task I believe . You see my huisbands little brother who is 10 years old was born with VBF which covers half of his face .He was living in a different state and his mom called us oneday and asked if we would take him till the end of the school year we asked why and found out he was being tormented and beat up everyday by the other kids at school and the teachers were just turning thier heads on this . I was outraged by this. So we agreed to take him in he is such a great kid , but now he is always so sad and my dauther goes to school with him and told me that he is a loner at school he stays to him self now Im worried about this anyone out there with this on thier face have some advice on how i can help him.??? It hurts me so much when adults stare at him or other children make fun of him i was in the store with him just the other day and some kid pointed at him and said to his mother look mom he has a diease on his face and to my shock the mother replied uh huh and just keep going unbelivable what has this society come to when we don't explian to our children that it is worng to point and stare!!!!
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Old 04-17-2004, 09:56 PM
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Default Re:A little worried?

How kind of you to care so much for that child! And how sad and maddening that he and you have to deal with those....GRRRR... > If you would like to discuss those issues with people having a PWS, I suggest you visit www.birtmarks.com. I know I recommend it all the time (although I do not have a PWS and am not a member of that group): it's because it is the best supportive group on PWS. There are also parents of children with PWS who belong to that group.

Another group where you would find discussion of similar experiences, and who is also a wonderful supportive group is http://groups.msn.com/vascularbirthmarksupport

Has the boy got laser treatments? And what about make up? On the first site I mentioned above they also talk much about laser treatements, insurance, make up...

I wish you the best: you deserve it.

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Old 04-17-2004, 11:39 PM
eprmo eprmo is offline
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Join Date: Dec 2003
Posts: 133
Default Re:A little worried?

My daughter is 14, and she has had a large H on her nose since birth. Life was not always easy for her,,but I feel it's so important that you continually tell him he's gorgeous, and kind, and special, and in the meantime look for help. My daughter didn't receive any treatment until she was 11 years old. She has had three different laser treatments and is scheduled for corrective surgery this summer.

It's very hard growing up, PERIOD, and to have to deal with this on top of everything else, is even harder

TALK,,TALK,,TALK to him,,, explain all about inner beauty, and let him talk too. He needs to express his feeling s about his face, and the hurt he feels. Sometimes kids express easily, other' not,,,

I know about the staring, the pointing, etc...When you see this,,,smile back, or laugh,,and let him and everyone else know,,,, it's their problem, NOT YOURS or HIS!!!! Show your sense of pride about him, and how you truly feel about him,,,,He'll internalize that too...Never show annoyance....,he'll internalize that too...

I would also go into the school and talk to the teachers and principal and school pscychologists, and ask for support from them,,to help him fit in!!!! Sometimes if you give the other kids information about him (w.o him knowing) it helps.. I am sure there is at least one person who would accept him,,and sometimes that's all you need.

I agree, check in with a support group, it'll help you deal with all of these issues you took on. I commend you for being so kind and supportive of him..He must know (inside) how lucky he is to have you!!!

When you know exactly what he has,,there is always treamtent available..We can help you, and so can many other support groups...Again,,I applaud you for your devotion to him,,you must be a special person!!!!!!
Elissa Rifkin
VBF Developmental Specialist
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Old 04-19-2004, 01:41 AM
hankbartenbach hankbartenbach is offline
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Join Date: Oct 2002
Location: Nebraska
Posts: 533
Default Re:A little worried?

Hi roger29,

I was in the same place your brother-in-law is back when I was his age. I am now 21 and still some what of a loner, expecially after high school when I moved away from home. I have never really had a sold relationship with a girl, or really really dated either.

When I was his age I started getting active in sports and got hooked on a couple of different hobby's.
He needs to find something he like or is good at and run with it. The other kids just have to warm up to him. I would say it was about the end of middle school when the kids stopped bugging me and they started to grow up alittle bit. Yes, people still stare and point every where I go but I just stare right back and point at them and laugh because they are the ones looking like fools and not knowing what they are talking about.

If you sit down with him and get his interest down on a paper, then start getting him active in some thing he will meet friends and succed in life.

Let me know if you need anything else we are all here to help.

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