Marcus Gunn Jaw Winking Syndrome Group

I have a daughter that was born with Congenital Ptosis of her right eyelid with Marcus Gunn Eyewink Syndrome. She is 6 years old today. When she was born, the first thins I noticed was that her eye was closed. When she was eating, her eyelid moved up and down. She was diagnosed with the above condition when she was 1 week old. The ptosis improved a little bit over time. Last year, she underwent eyelid surgery to raise her eyelid. Needless to say, it did not work. (The improved appearance of the eyelid lasted only a few days). The surgeon did say that she may have better results when she is older and can stay awake for the surgery. She is now at the age where other children are beginning to ask questions and look at her as if she is weird. It's absolutely killing me. She is a beautiful little girl who is strong and intelligent. I am most worried for her teenage years when girls are extremely self conscious of their appearance. And let's face it, children can be very mean and hurtful to their peers. I am very glad to see this support group. Not many people know what this condition is. Thank you for creating this group.

Hi,

I have just introduced myself in another thread you have joined but as you have more specific questions here, I'll amswer them aswell

There will most likely be teasing, especially in the teenage years but you will have to treat it as if it was for any other thing - race, weight, hair colour, glasses, etc. Like I'm not saying it's right, but we all know it happens. I think you should give her the same advice as you would if she came to you from being teased about any of those other things. If they're really horrible to her, then they're not worth knowing anyway, etc. I've been lucky with teasing, I was teased more about being overweight than for my eye. I don't have ptosis but I do have the wink. One of our members is a young teenage girl with the eyewink, and I think she is absolutely beautiful! To me, I'd probably equate it to having an extra finger. You sorta go "eeee" but you're not repulsed by it, more intrigued. Several people on here have agreed that it's a good party trick - look down and move your jaw. People love it, honestly.

When I was entering my teens, i asked my mum if i could have surgery, she told me I could when I was 14 or something. But 14 came and went and I didn't want it at all. My friend, bear with me, is half welsh and half english. because we live in england and most people are english, she played up being welsh a lot. I think this is because she wanted to feel special and unique. If I'm honest with myself, if I could make it go away, I wouldn't. Because I'd forever be telling people "hey, this'll interest you, when I was younger I had this eye thing..." but now, I can show people. It's a "quirk" rather than something I don't like.

And as for boys, I've had no problem getting them since I've grown up from high school. I think, young children don't care, they're too busy playing with toys and even when they point out obese people and say "look, they're fat!" really loud, they haven't decided that means they are a bad person. So even if youngsters ask about it, they're just curious, they're not being intentionally rude or hurtful. In the teens, I suppose it can be a bit rough as children start to care about how they look. Then, hopefully, When they leave high school, they're alright again because people have grown up enough to not find it funny to tease people anymore and she'll have loads of friends because of her personality. Most of the time, if you don't make a big deal of it, noone else will.

I hope that reassures you some and I hope you get time to read through the other posts where other people have written about their experiences, good or bad

Laura x

Hi! My daughter also has ptosis and MGJW in her right eye. She had ptosis surgery to raise her eyelid at age 5 and then again at age 9. The eye looks great now but the surgeries did make her wink more pronounce when she eats or makes an exaggerated face. The doctor told us about frontalis slings and I honestly do not know if we should do this surgery. The surgery is in both eyes where they cut the levator muscle and string it to the eyebrows. She will have to use her eyebrow muscles to open and close her eyes. She also will not be able to blink exactly like us. Have you heard of this surgery?

I'm afraid i don't really know about the surgeries, I can only comment on the social side of having a wink. The doctors told my mum and she has told me that to have the surgery would have left a scar down my face and that's all I know, I'm afraid. (The doctor said this 20 years ago so I'm sure things have progressed since then)

I hope you can find other people who can help you here though

Laura x