Hi we are the Murray family from Australia. Andrew is 40 years old and has AOS. Sophia is 10 months old and also has AOS.

I am Celeste's Dad  she is now 13yrs old. We both have AOS . When I was born they did not have a clue. When she was born there where 12 reported case's. We have learned

alot over the years as you all will. We would like to provide any help that we can as it sounds like you all have very young children. So please ask and we will both give you the best answers that we can.

My name is Artika and in January 2009 my husband and I had our first child, Nikhil. Nikhil was diagnosed with Adams-Oliver Syndrome a few days after birth due to his limb deformites of the hands and feet and cutis aplasia. We were completely shocked, because both my husband and I are healthy, were expecting a healthy baby, and have no family history of anything similar to this. At 3.5 months of age, Nikhil had surgery on his right hand for a webbed thumb and index finger. During this time, he was developing just fine otherwise, until he started having seizures at 6 months of age (July 2009) and developmental delay around the same time. He spent over a month in the hospital this summer in attempt to get the seizures controlled. He is now at home and the seizures are improving but have not completely resolved. We are hoping this will happen soon and are hoping his development improves now that the seizures are better controlled. We are so thrilled to have found this support group and are happy to help any other parents. Please feel free to contact me via the website.

i'm Danny hi

i have AOS,

My third child and only son is 4 years old and was diagnosed with AOS when he was 3.  His two older sisters (14 and 9) have shown no symptoms.  We are fortunate that most of the manifestations of the syndrome have been relatively mild, with the exception of his heart defect.  

My name is Jenn and although my 3 1/2 year old son, Gabe, has not been officially diagnosed with AOS, I'm certain this is what he has.  He went through all the tests when he was born, but they came back negative.  Since those early months, I've just stayed far away from the geneticists and was of the mind that not knowing might be better and that it was best to focus on all his needs for the time being.  We had a son between my oldest (who has no abnormalities) and Gabriel who passed away at four months.  When he was born his soft spot was large and he had a small penis.  Doctors had no concerns and then at four months, he got sick very suddenly and died from a blood disorder called Hemolytic Uremic Syndrome.  Doctors had no clue what brought it on.  Of course, they had no idea that our little one had any type of genetic disorder either.  During our 20 wk ultrasound with Gabe, the Doctors noticed "smaller" feet and a small penis.  They couldn't be sure about his skull, but it did look like his soft spot was large.  When he was born, it was worse than the doctors anticipated and he had a spot of brain about the size of a drink coaster exposed.  He also had these small peas for toes and a bent, webbed finger.  They rushed him to the Johns Hopkins NICU.  Unfortunately, the attempts to graft his exposed area didn't work because of so much cerebral spinal fluid (which apparently skin does not stick to very well!).  After four very long months and 15 surgeries, Gabriel came home.  Unfortunately, during the expansion of his forehead skin (another attempt at covering the exposed area), a larger part of his brain herniated and had to be removed.  He's three and a half now and we're going into our 23rd surgery on Monday.  He still has a large portion of his skull open, so we are working to get that covered up slowly but surely.  He's a happy and bright child. While he is severely delayed, we don't know if this is a result of so much brain matter being removed or of his syndrome.  While he is cognitively normal, his speech is very delayed.  He's has hemi-paresis (onesided paralysis) due to the brain dissection, so he's just started walking and doesn't have use of his right hand at all.  That said, he's a happy, healthy child who has defied all odds.  He does have hypertension and his doctors have always thought that was a result of damage to the kidneys from the antibiotics as a baby.  After reading these posts, I'm certain it's the condition.  I'm so happy to have found this site (completely and utterly by accident!) and know there are others out there with these same issues.  My guess is that the Drs. have screened Gabe for AOS and it came back negative, so he must have a variation of it.  The symptons are just too similar.  Anyway, love to read your stories and will definitely be asking a ton of questions on the boards.  Feel free to reach out anytime - jumpinjenn@hotmail.com 

My daughter Kirsten was born March 9, 2006.  She was diagnosed with AOS the following day.  Kirsten had cutis aplasia, small toes, a single kidney and tetrology of fallot.  She was released from Dayton Children's Hospital after 7 days.  She has always been very strong.  She had her tetrology of fallot repair at 9 months old.  After her first birthday, she started having abdominal issues.  After a long period of time it was found that she had major vascular abnormalities that resulted in her having her spleen removed in December 2008.  Previously she was small for her age, but we nevered worried since we are not tall.  Since the surgery she shot up and is now the same height as most of her school friends.  Most recently Kirsten was in the hospital with meningitis due to her spleen removal.  Otherwise, Kirsten is a very intelligent, loving child.  Her verbal skills have always been ahead of other kids her age.  We are hoping to find more information so we can help her understand this syndrome. 

Hi,Im Kerry.Daisy was Born 13/04/2010

She was diagnosed with AOS a few days after, with large Skull Defect. Now shes 6months old. Her troubles came as a complete shock at her birth. She had an area of 15cm x 15cm approx,that had no skin formed,it looked like a scary open wound. The Skull defect is also this big.  She will need constrution surgery to protect the brain,then bloon treatment for hair growth. Daisy has small underdeveloped hands,missing toes,some webbed toes and overlaping toes,some of the formed toes have no nails. Daisy also has 6mm Arterial septal defect ASD,& pulmonary Artery steriosis. Also She suffers with Apnea attacks(Stops Breathing).Has been on antibiotics since Birth. She Will always need a helmet. Daisy is still healing and still has an open wound type head,just a little smaller from the start. Im starting to relax alittle now, and im happy for anyone to contact me. We have various opinions on dressings,and care. Every day Daisy gets that more stronger and bigger,so everydays a good day:)