I am the aunt by marriage to the child born with this syndrome. She is actually surviving but I am just wondering if there is anyone out there living with this now. I want to know what to expect the family is in deep shame and disbelief at the condition of the baby. I was very upset by this and the fact that she was born with this. Any info is much appreciated. Thanks, Julie

My granddaughter has this syndrome.She is now 6yrs old.Born with one eye, she has some sight,but we dont know how much she can see! We have to wait untill she can talk to tell us.She was also born with one kidney,deaf in one ear,two club feet,one leg longer than the other,tortocolis of the neck,rib cage larger on one side. It has been a fight to keep her healthy,but after several surgeries,she can walk with assited help and she has a glass eye for the missing eye to give her the appearance of a normal child.There are many stares from the public,but she is very happy and loves to give kisses.

Hi again, I wanted to share more on this subject. Ever since my granddaughter was born there have been plenty of doctors appointments. One doctor even told my daughter that my granddaughter may not live pass the age of 1 yr. Another doctor said she wouldn't be able to walk ever. But all of the theories from "experts" have been proven wrong. There will always be doubters and naysayers, but everyone has to believe in faith and their own heart when it comes to these disorders. It's sad to say that some are ashamed of how a child may turn out, but God does not give you more than you can handle. My daughter learned that for herself. She struggled with it for the first years of my granddaughters life. It is a tough road and hey my granddaughters father is ashamed of his first born and had not been in her life since she was 3 months old. He had the thought in his head that he could not produce children with any type of disabilities, but you know things happen. It's just the way it is. We either live with it or stray away from it and avoid it all together. In the case of a child with any type of disability we should embrace that child and do what we can to help that child live a full life. What to expect? Well with any child you can't predict what will happen even when it comes to those who have been through the same thing. Every child is different and adapts differently to their traits. My granddaughter may have this syndrome, but with her being blind, she does not adapt to certain things or has adapted to certain things as another blind child has. She is a bit slower with things. In certain areas. But nonetheless with all the help she receives she is learning at her own pace. So basically, my best advice in what to expect, expect the unexpected. Look up all the information you can possibly get about the syndrome. There are articles out there about it. Not much, but a substantial amount to help you grasp a better understanding. Whatever area your niece is having issues in, help your family get research in that specified area to help her along so she won't be left behind as she gets older. If she is blind, look up info on how she can be assisted with that situation. If she can not walk, talk to orthopedic doctors about how they can assist her in this area. If she has developmental delays in talking, eating by herself, walking, crawling, etc there is help out there. Talk to doctors, schools, etc. During these past years my daughter and I have done a lot of research and questioned a lot of people. People are very helpful, once you put yourself out there. Try and help your family not to be ashamed of your niece, that will only hurt her as she gets older. Help them understand and show them a different way to handle this situation. I hope everything works out for the best, if you ever need any advice don't hesitate to post here and I will be around to answer any questions.

Hi, we are mothers from Germany - our Kids also have Fraser. .Please feel free to visit us: www.fraser-syndrom.de Community: www.forum-risiko.de with kindest regards Ramona

Hey there! I am a 36 year old woman that was born with Frasers. I too broke opinions and sterotypes. Feel free to ask any questions you would like to.

Ramona: The site is in German. I don't speak or read in the German language. I wish I could because I would like to read the site. :). Again, if you have any questions, I would be happy to answer them from a nonprofessional background. I do have experience with living with Frasers and I will help you as much as I can with practical support.

WOW great to meet you all those months back when I first found out my ittle niece had this syndrome it was like we had no one to talk too. I am finding now that even the doctors just talk they really don't know what to say they only speak theoretically. Now I need some help here she was born without the ability to breath by herself everything is underdeveloped in her throat. So with the doctors all expecting a normal baby she was left without oxygen for at least 20 mins at birth while they tried to figure what was wrong. Then they finally put a trach in her throat. Now the problem is brain damage from the lack of oxygen and, to make it worse I am not sure why but she is always vomiting? Please tell me what to do should they place her G-tube deeper or as in my mind being a mother maybe it's just simple lactose intolerance. I don't know why they just want to cut and, always put her on meds. I mean she does have some problems but why not first see if she is just lactose intolerant? Please advise me of any further complications that seem to come up. I mean I am really in the dark here the Dr who is in charge of her doesn't know anything nor does she bother to look up anything. This really enrages me because I think if she did she might get info that could help better care for the baby. She is now 8 months old. Thank you all so very much for coming to this forum. I have been in need of you for some time!!!

Granny, Faithrocs2, Please let me know if your granddaughter had any vomiting issues and, what you did to help her.I wish it was only Frasers that she had but unfortunately she is also brain damaged which I am learning has a slew of it's own problems. any advice is welcomed also any doctors that you know of that treat this syndrome with care and, understanding please forward their info also. Also my name is Julie.

OK, there is a ton of things to share. My email isL faithrocs2@aol.com. Send me your phone number and I will call you. It is way too much information to type. I would be typing for days on end. I think I have some good advice for you.

Many thanks for your reply! I am the owner of the Community and it is no Problem, to add an English Corner ;o) The Community Software also has an English Option. We hope to "find" parents or concerned(?) Patients. You only should excuse our bad english ;o) We are two mothers here in Germany right now, Rita ( http://www.forum-risiko.de/viewtopic.php?f=8&t=45 ) and myself. My daughter also has a tracheal tube, she is blind,her hearing is almost ok now. She also has Syndactilie.

I too threw up a lot as there was webbed tissue in my throat. I also had a trach. I also had the webbing of the fingers. I had surgeries to remove the webbing on my fingers and in my throat. There are certain traits that are common for everyone but yet each person can have traits that are not common to everyone with Frasers. An English corner would be FABULOUS! I would love to contribute in any way I can. Let me know when it is ready. My email is: faithrocs2@aol.com. I also have a FACEBOOK and Myspace account under my email name. Feel free to add me. They have instant messaging programs on them so we could talk online. I will be very patient in regard to your English! :). I am moving this week so I will share some more info after I get moved and settled.

I have an almost 3 year old daughter with Fraser. She is absolutely the joy of our family (youngest of 3). Everyone is born defective in some way, and we all need help sometimes. So don't stress about your little one's not being perfect. Just do the best you can for them and watch them take off!!!

It's so nice to meet everyone. This is great to see all of us come together under a similar situation and try our best to help one another. Hi Julie, Generally what I have experienced with my granddaughter and majority of her doctors, no one can explain this syndrome. So basically what happens is, each problem area with my granddaughter we try to get to a specialist to get some help with that particular problem she may be having. Like someone else explained, each person who has this syndrome has a different level of it. Or have some different problem areas than another would have. I say if she has a lot of issues with vomiting, have her peds doctor check her out and ask them question after question to see how they can help her. Ask them for a referral to a specialist if needed, if they can not figure things out. Possibly an ear, nose and throat doctor. If you think it's an lactose intolerance issue, suggest that to them and see how they respond to that. If they say "Well, no". Ask them to run a test just to ease your mind on that one issue so that can be ruled out. With my granddaughter we always question the doctors, to see what can and can't be done. We want all the help we can receive. If they aren't sure about one thing, we ask for a referral or we may suggest, "well, what if she has this or she is experiencing this", in most cases, they reconsider things and do more research. Ask them to do x-rays, cat scans, etc. Get the most out of these physicians. If your niece's doctor doesn't seem to care, find another primary care physician. My granddaughter has a wonderful primary care physician here in Michigan along with wonderful specialist. And if we (myself/my daughter) do not feel that one doctor isn't handling business right we search high and low for another doctor. In this case, research is the key. It helps with understanding a lot of things. If the doctor won't research, then you and your family can research and bring in documents to the doctor and if she doesn't seem interested, time to find a new doctor, definitely. Every child deserves the best in what ever, especially when it comes to their health. I hope this passage helped in some way. Hope to speak with you again soon. God Bless. My Grand Daughter's Physicians: Eye Care for her blindness (Dr. Greg Dootz provides her fake eyes) (Dr. Steven Archer provides her eye care): Kellog Eye Center in Ann Arbor, MI - http://www.kellogg.umich.edu/ Hearing Issues/Ear, Nose & Throat (Peter Phillip Passamani, M.D.): University of Michigan Hospital in Ann Arbor, MI - http://www2.med.umich.edu/healthcenters/clinic_detail.cfm?service_id=1038 Skeletal Defects (Frances Anne Farley, M.D. & Clifford Craig, M.D.) - University of Michigan Hospital in Ann Arbor, MI - http://www2.med.umich.edu/healthcenters/clinic_detail.cfm?service_id=325 http://www2.med.umich.edu/healthcenters/clinic_detail.cfm?service_id=1160 ... as of right now those are my daughters main doctors that she visits. I listed these just in case anyone wanted info to really good specialist.

One thing to consider in regard to the vomiting, I had a web in my throat. I outgrew that effect and eventually I had it burnt out with a laser. If any of your doctors want to test me or ask me questions, feel free to give them my email. The more information they have as a collective whole, the better it will be for those born with Fraser's. I am moved and settled so I will be calling this week. Please email me your numbers again, My PC crashed and I had to do a restore and I lost all of my saved emails! Grrrrrrr. I do apologize and I would love to help in anyway I can,

hi!!!I leave in Greece and i work as a speech pathologist. last week a 5 yr old girl came to the office i work... i never knew what Fraser is not even by books... i would really like if you can help.. in that case i will give you some details about this adorable girl! i need your help...

I will help anyone on this board anyway I can. My email is: faithrocs2@aol.com. It may take a day or two for me to respond.

Now you can find the English Corner to make possible an international exchange :-) Also Guest can post - if you register, it`s possible to change the Board Language in English. http://forum-risiko.de/index.php

I will also give you any help you may need . Contact me at any time. ccartwright1@comcast.net

Thank you all... I have to see this child (it will be the second time) and collect more information and i will communicate with you... Thanks a lot...i

I am 16 years old and living Fraser Syndrome. I'm really happy i found this website i really thought i was pretty much alone with this. Because of Fraser Syndrome I was born with a partially fused left eyelid, a smaller than normal larynx, a high arched palate, low set cup-shaped ears, only one kidney, a broad nose and partially fused fingers and toes Please feel free to e-mail me if you have any questions but i really don't no how much help i'll be seeing as i'm 16 and got very lucky with this disorder but i will surely try to answer your questions the best i can. One thing i would love to no is: How many surgery's have the people living with fraser had? E-mail: PlaYFreaK787@aol.com

So forum i am very angry so angry i cant even type right. I first came here to try and seek answers and get help for my niece. Well needless to say the parents completely let me down. They chose to leave her in a hospital institution and neglect there responsibility's to HER. see why i am so pissed off! UNreal. Then too boot they knew it was very high chance that any other babies would have it and suffer like the baby they have or worse die! What did they do? they got pregnant again. the worse thing happened yesterday at 11:02am a baby girl with fraser was born with no ability to breathe no larynx no esophagus nothing she passed quickly and it is sooo sad. I am so sad that another human had to suffer a life and death in this way. I am angry that the one surviving is being neglected! please help me. I know i went off on the father on the phone i let it all out and told him what i though. he now wants me to help him with his surviving child and how to better help her. please email me and i will give you my phone #. the surviving child needs help she vomits daily everything she eats she is on horrible meds to make her sleep she has 1 kidney. I am so angry at what they did to the innocent one left in the institution. and by having another one and now such a tragedy has happened. please don't get upset with me i feel they could of avioded this by taking care of there first child and, not worrying about having more! I need your experiences and surgerys you had done to help the deformities of this syndrome! kaousjulie@verizon.net that is why I didnt come back they left the baby in an institution and i became physically ill over it. I did not understand how they could rationalize doing that. He asked me to help and now that is exactly what I will do! Thanks

Hi everyone, to all those who left emails here, my daughter sent you an email. Hope you all received it. Hope your New Year is going good thus far. Granny

Yes Granny I did! Thanks to you and your daughter. I am just numb now. I really dislike when people are not responsible for their children. I hope to meet with the doctors next week to discuss what has been done what can and or should be done. I know she had the belly button hernia which they took skin from and applied to her eyes. BUT she grew and as she opened her eyes the skin broke and, now they look worse and I believe they must cause some pain as they get infected in the creases frequently which I don't know if that is because of the fluid or her weakened immune system? anyhow too much to type and I am still angry and frustrated. Peace

Hello to all We as a family have been through 30 surgery's to date for Kyle's Fraser Syndrome anomalies. If we can help you through anything related please ask. We have been through the following surgery's: Eye's (cryptophthalmos) Ear's Larynx Hand Tongue Urinary Skin Grafts Reproductive Dental I can remember back when Kyle was born, how alone we felt. What we would have given to have a web site like this to talk to others that have gone through this before us. A place to ask questions, ask whats next???? We where totally blindsided at Kyle's birth by Frasers. It took 2 Hospitals 6 weeks to come up with "Fraser Syndrome" for what was wrong with Kyle. Kyle didn't come home for 3 months after her birth. As a parent of a child with Fraser Syndrome, we often know more about Fraser Syndrome then most of the doctors we see. Kyle has an older brother that shows no signs of Fraser Syndrome. Kyle is now 16 years old and leads a very active life with an incredible group of friends. Kyle acts in plays, she has a beautiful singing voice and even plays on her High School's Ice Hockey team. If I can be of help to anyone please shoot me an e-mail, your not alone. Chuck

It has been awhile since I have been able to post on here. Kept telling me that my password was incorrect and wouldn't send me a new one. My thoughts are this: for something that is so rare, there are more people being effected by it. Welcome to those I haven't seen on here before. If there are this many cases on this forum, how many more are there out there that don't have the internet to find similar cases? I knew a doctor that was going genetic testing to try to determine why the genes mutate. However, she had to close the project due to a lack of funding and lack of test subjects. One word of advice to the parents with teenagers with Frasers that are in the US. It would be very wise to check with your state and see if they have a local Vocational Rehabilitation agency. Once your child gets ready to graduate high school, I would say about six months before, take them to your local VR agency and apply for services. They can help with tuition for college and any assistance your child might need (glasses, hearing aids, and etc). I would also recommend that parents with children effected by Frasers apply for social security disability for their children. Here is why: your child would get medicaid which would cover medical expenses for them as they are younger and older. Your insurance plan will only cover them for so long once they reach the age of 18 and they may not cover everything they need. Secondly, finding a job when you live with Frasers is incredibly hard, but not impossible. This will give them something to fall back on until they are able to secure full time employment that is stable. If they take a job and it doesn't work out, they are able to get back on SSD. I wish my parents had done this as I have a hard time getting a job and keeping a job as my hearing is getting worse and my vision is getting worse and other health problems. I am stuck waiting for SSD for another 12 months, if not longer. I am having to appeal it yet again as they don't think I am disabled. where as if my parents had gotten me on it when I was younger, this would not be an issue. The fact that I didn't get into the system before I started working and now I am doing it after I started working, it is incredibly hard for me to get the help I need. They don't consider that health problems get worse or it is harder for me to find jobs or that I am the first one to get laid off when they start laying off ppl. I have never received it before and now that I need it due to my health becoming worse, I have to wait for it and I cannot do that being a single woman. I don't live with my family and I am not married. I don't like recommending the SSD as it seems to further point to the label I want to avoid but it is something that reality forces you to deal with. I could really use some support right now so if anyone is up to it, feel free to email me: faithrocs2@aol.com

You are absolutely right with what i have researched the genes have been identified. The ones who are the specialists on this syndrome are in south America believe it or not and, there are many cases of this syndrome in certain areas especially where consanguineous marriages are common practice. The thing is many die at birth or soon after the under developed laryngeal is to blame as well as renal agenesis and the other issues of under developed organs and, brain. I would advise you to get an attorney only because you need help now I would also get all th medical history's you have together ssd is a headache and a half. Nowadays they put the kids on it right away but in the past that wasn't so. I hope the best for you Wendy thats the best advice I can give you now. Be proud of yourself and, all that you have accomplished you have done much aside from what you have been dealing with and I have alot of respect for you and, hope all the best. Julie~ kaousjulie@verizon.net

Hi Everyone, What I would have given to have this community when my heart was breaking. Alec died one hour after birth. Fell pregnant again straight away only to find out that Alec died of Fraser Syndrome. Had a ultrasound with Jayne and she had no kidneys. I had twelve hour labour and gave birth at just 20wks gestation. Had six month break and said we had one in four chance of having a baby affected. I tried and had top people in Australia say she perfect baby girl. Rebecca died also after brith. Larynegal stenosis. Such sad time but alias I fell again and had healthy son. But he had webbing of second and third toes on both feet. Nothing else. Then gave birth to another baby boy and he was perfect again. This time no webbing like his two brothers and sisters. We were told to keep trying because we wouldnt have chance of adoption etc. Sounds like they have identified the gene. So my boys can be checked to see if they are carriers. I wish we had known their where babies that survived and live. Just no clue on anything to do with this syndrome because it so rare. We are all related because we carry this gene. So hello to you all. Lovely meeting you and your strengths and heart. Thank you for helping parents who have a child with this syndrome. Advice is so precious. Chris