Nadine, 38, Warwickshire

I was born with medium sized portwine stain on my cheek, I was very self conscious of it as I grew up,but my family helped build my confidence, and taught me to just say its my Birthmark and its special, but I'd still have the odd day when I would come home from school in tears because a kid at school said something mean. Now I dont even think twice about my birthmark and half the time I have to stop and think which side of my face it is on. Now I'm expecting my 1st child and have been told he/she will have a unilateral cleft lip

Christine, Ag, Surrey

I see that there are a few comments here from parents of children with Goldenhar Syndrome. I am the current Chair of the Goldenhar Family Support Group (UK) and I can email you information if you get in touch. If you also want to join our support group, you can receive our newsletters and come along to our family days to meet other families. Changing Faces sometimes attend our family days and have left a number of their publications with us along with details on how to order your own copies. We also run a yahoo group goldenhar-uk-support for families affected by Goldenhar Syndrome and this is free to join. I hope to hear from you soon. Regards, Christine website: www.goldenhar.org.uk email: info@goldenhar.org.uk yahoo group: goldenhar-uk-support registered charity 1099642 patron: Dr.Chris Steele MBE

Stefanie, 23, chessington

I was born and after few minutes mum always said a red mark came on my face done laser but the portwine stain still there affacted my life a lot got really low confidens in me I don't feel good at all I try to not let my son notice how I feel and I don't feel comfty to pik him up from school cos children bully him and all cos of me

Stefanie, 23, chessington

I was born and after few minutes mum always said a red mark came on my face done laser but the portwine stain still there affacted my life a lot got really low confidens in me I don't feel good at all I try to not let my son notice how I feel and I don't feel comfty to pik him up from school cos children bully him and all cos of me

Stefanie, 23, chessington

I was born and after few minutes mum always said a red mark came on my face done laser but the portwine stain still there affacted my life a lot got really low confidens in me I don't feel good at all I try to not let my son notice how I feel and I don't feel comfty to pik him up from school cos children bully him and all cos of me

Stefanie, 23, chessington

I was born and after few minutes mum always said a red mark came on my face done laser but the portwine stain still there affacted my life a lot got really low confidens in me I don't feel good at all I try to not let my son notice how I feel and I don't feel comfty to pik him up from school cos children bully him and all cos of me

Kate, Leicestershire

Rachel (Redhill, Surrey), I am horrified by the attitude of your daughter's school to her appearance. It is utterly unacceptable. How can she develop to her full potential if the people who are supposed to be educating her are themselves so abominably ignorant? I hope you have contacted the school's governing body, and, if you have no satisfaction from them, the LEA, to complain that your daughter is being discriminated against - illegally - because of her disabilities. All schools should value each and every pupil and make it explicit that they expect pupils and their parents to value and support each other. If your daughter has a Statement, it might be worth looking at the terms of that to get her a more supportive placement - if you need help to get the SSEN altered, IPSEA (Google them) may be able to supply it. My very best wishes to you and your daughter for better experiences in the future.

Dee Wingrove-Smith, 36, Kent, UK

My son Sean is nearly 8 years old, with Goldenhar Syndrome and also Tracheo-Oesophageal Fistula and Oesophageal Atresia (TOF/OA). Sean is wonderful kid, very intellegent and sociable. His has an extra rib, microtia of his right ear and assymetry to his right hand side of this face/jaw. The TOF/OA was repaired at birth and now causes very few problems. What concerns me now is preparing for the possible ear reconstruction surgery that Sean may want done in 18 months. Sean is also now very aware that his face is different from other children and is upset when he sees photos of himself smiling as he smiles unevenly, this is compounded by the lack of front teeth.... Sean gets very frustrated as he has some speech issues and although he has regular speech therapy he finds it very hard when he is asked to repeat himself and gets very defensive - any ideas on how to deal with this?

Karen, Ag, Dundee

My son is 12. He has Goldenhaar Syndrome. His face is asymmetric he has a small, disfigured left ear and an under developed left jaw. He has a missing lower right limb with a club hand and some spine curvature. He also has other problems such as pulmonary stenosis and deafness. On paper it looks bad but he is a happy, confident and well adjusted boy. He has coped with all the milestones I have worried about - starting school, moving up to secondary school - and made new friends easily. We talk openly with him regarding any issues and speak about how he wants to deal with people's reactions. Most of all we encourage him to be himself and not be defined by his so called disabilities.

brianne briggs, 26, heckmondwike, west yorkshire

hi my little amber is nearly 2 and is my 4th child. she was born with a big port-wine stain to her right foot, ankle, leg, buttock and spine. all on the right hand side of her body. the midwife said there was something wrong which was horrible to hear as i lost my 3rd child to cot death in 2005. but it was a birthmark, so what i said. but the amount i didn't know about how it can affect people and how it can attach itself to other parts of the body blew me away, i have learnt a lot from this experience. people say well least it isn't on her face or you can hide if, why the hell should i. its part of my daughter she has grown up with this from day one. i am not ashamed and will not cover it up because i love ruby and i always say u have to take me as i come or not at all. ruby is not at a age yet where she understands her skin is different from other children, but i tell every1 who asks what it is and why she has it and they respect it or don't simple as that. i will bring my daughter up knowing the full story, of having internal x rays, a m.r.i scan, eye checks and various other hospital appointments she has had, especially now the laser treatment she is having to try to lessen the mark, as i don't want her to say why didn't u try when i was a baby to get rid of it, i hate u 4 that. i don't like seeing her in pain or not think i could lose her because of having g.a's 4 it. but children as they get older especially girls, then boys when she is a teen can be horrible and call names because they will pick on the easiest floor she will have. i will bring her up proud and not be ashamed of her birthmark as its part of her and always will be. u will get people in life who will except it or the 2nd lot who wont. its them u don't want in your life. if it doesn't bother u as there parents they r marked why should it bother them as they older, just educate them and they will survive xxx xxx xxx

Lisa, 28, Reigate, Surrey

My son was born with a large port wine stain on his face and now, at the age of 9 is trying for more laser treatment to reduce it. He had laser treatment when he was a baby for over 3 years and, although it worked a bit, the mark is still quite obvious. He is now very aware of what other people say and think and it has affected his self-confidence and self-esteem. When he was young I really struggled with the looks and comments that we got from adults, with them often saying 'oh, has he been in the wars!' It really looks nothing like a bruise but some people are so unaware of how birthmarks can look. Now both my son and I just have a flat phrase for anyone that asks or comments, 'it's a birthmark'. We rarely have any response from that.

shannen murray, 15, blackburn

My daughter was born with a strawberry hamangioma she has had 5 operations and she is absolutley beautiful she has had a hard time growing up but she is so strong funny and confident i love her to bits

nicola chalmers, 33, fife scotland

Experience hi my wee boy was born in june this year, he was diagoised with goldenhar syndrome. this is a syndrome that effects one side of face and body. he has no left ear, slightly smaller eye on left side along with slightly smaller nose on left side. he also has rib and spine abnormalites and if feed through an en tube. i find it very hard when adults not children stare and wispher why not jist ask wats wrong. finlay is a lovely wee boy who smiles and laughs like other babies it hurts so much that people cant see past disablites and see this.

nicola chalmers, 33, fife scotland

Experience hi my wee boy was born in june this year, he was diagoised with goldenhar syndrome. this is a syndrome that effects one side of face and body. he has no left ear, slightly smaller eye on left side along with slightly smaller nose on left side. he also has rib and spine abnormalites and if feed through an en tube. i find it very hard when adults not children stare and wispher why not jist ask wats wrong. finlay is a lovely wee boy who smiles and laughs like other babies it hurts so much that people cant see past disablites and see this.

jane, Ag, south west england

Experience.. my daughter was born with a complete cleft palate and pierre robin sequence, which means she has a small chin and an overbite. but she is beautiful and kind, funny and sweet, and so affectionate and loving. she is 9 now and her teeth are quite crooked but she will have a brace to try to correct that in a couple of years. her cleft palate was repaired when she was 1 year old and she is due to have a further operation next year to lengthen her soft palate. she looks so beautiful to me and i think beauty comes from differences and unusual faces and inner love.

Roma, 26, Jamaica

I was born with clef palate, and for 25yrs of my life i speak funny people laugh, stare, mock the way i speak . But you know what i learn all these years its doesnt matter what people think or say about you, Your'e disabilities does not determine your futher only if you allow it to, each time someone laugh at you that should make you more stronger and determine to prove to youre self and also them that because youre different that doesnt make you less of a person. Remember this God only use unique people with good hearts. People who laugh at people's disabilities are heartless i would rather talk funny for the rest of my life and be a kind and loving person toward people than to look or talk perfect and have a bad heart. Peole with disabilities are more loving it like this peace dwell over them no matter how they look you can help but love them and they have this joy about them there spirits are so genuine. Mothers love youre children no matter how they look or talk just raise them up to be the best that they can be and dont ever get angry at God cause he have giving you an angel love the child and not the way he or she look like, and if you watch that child closly he or she can teach you how to appreciated life more. P.s these parents get angry when people laugh at there child or would they prefered that is was there child laughing at someone elses child, think about it do you want to have a normal looking monster or a disable angel.

Donna Pooler, 35, West Midlands

My daughter has a large port wine stain on her face due to Sturge Weber Syndrome.She is outgoing,vivacious,happy and extremely confident.Due to her learning difficulties she doesn`t notice the stares,nudges and comments people make when we go about our day to day lives in fact in one instance she laughed with the people making fun of her which as you can imagine made me very sad. But out of all the sadness comes much joy seeing my daughter confident and happy and up there with the best of them attempting any challenge or opportunity that comes her way in life. Don`t hold back be strong and live your life to the full!

sharon, 32, durham

MY DAUGHTER WHO IS 7 MONTHS OLD HAS A SMALL PORT WINE STAIN ABOVE HER TOP LIP ,GENERALLY CHILDREN ASK OUTRIGHT WHAT'S THAT ON HER FACE? WHICH IS FINE BECAUSE GENERALLY THEY ARE CURIOUS AND THEN MOVE ON.HOWEVER SOME ADULTS HAVE BEEN QUITE BLUNT IN THEIR COMMENTS WITH ONE WOMEN TELLING ME I HADN'T CLEANED HER FACE VERY WELL OR I GET "IT'S SUCH A SHAME"WELL NO IT ISN'T ACTUALLY BECAUSE SHE IS BLOODY GORGEOUS!!!!!!!!!!!!!.IT'S SO ANNOYING AND RUDE,SOME PEOPLE NEED TO ENGAGE THEIR BRAINS BEFORE SPEAKING OR I MIGHT FORGET TO ENGAGE MINE ONE DAY.

Rachel Adam Smith, My, Live Redhill, Surrey

Watched This Morning. My daughter's face is not symmetric and she has some special needs and can't talk. I found the programme very interesting and very important. My daughter was barred from sports day because the schools attitude was Year 2 boys will say horrid names and parents might laugh, I couldn't quite understand it, why would they laugh at a child that has survived against the odds. Children at the school stare at her and say nasty things. It is really important to try and get these children to stop staring. It is very upsetting and as a result she doesn't get included into things. It is important parents talk to their children.. but most of the time they are too busy with their lives that are fine to be bothered explaining an important thing as to not to stare and to include children whatever they may look like. Thanks

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