Nicole Rose

WELCOME to Nicolerose

Welcome to the Nicole Rose page

Welcome to Nicole's webpage, a place where you can follow Nicole's journey living with Aicardi Syndrome.  I hope you will get to know my wonderful little girl, she has touched so many lives, she is a little fighter and I am so proud of her.

Nicole was born in The Rotunda Hospital on the 26th of August 2013.  She was delivered via emergency c-section after becoming distressed during labor. Upon delivery the Doctors immediately noticed that her eyes were very small and we were told that she would need to be seen by a specialist the next morning. At 6am Nicole was taken from my arms and at only 12 hours old she had her first examination by the eye specialist. He diagnosed Microphthalmia. Nicole was brought back to me and I was given the devastating news that my precious baby girl would most likely be blind. That same day it was decided that Nicole should have follow up ultrasounds done of her head and kidneys, just as a matter of routine to rule out any other problems. I carried Nicole down to xray and the sonographer put the transducer on her and proceeded to check her kidneys. Her kidneys looked fine. Next she moved up to her head and I could see from the look on her face that something was wrong, I looked at the screen and I asked what the black space was and she said that it was fluid on Nicole's brain and that there seemed to be a lot of it, Nicole would need to be brought to temple street for an MRI to find out more. Utterly heartbroken and in deep shock I carried Nicole back to the ward. I held her for hours, not wanting to put her down.

The next morning Nicole was taken by ambulance over to Temple Street, I was not allowed to go with her. When she got back the consultant came and told me that Nicole had Hydrocephalus and that her brain looked abnormal, I don't remember much after that, everything that happened over the next two days is a blur. Nicole was transferred to the ICU and I was allowed to go home to be with my son Matthew for his first day of school, that itself was a little ray of happiness, it was so important to me that I didn't miss his big day. When we returned to the Rotunda we met with Professor King, a neurologist, and she sat us down and explained that she thought Nicole had something called Walker-Warburg Syndrome. She told us that Nicole would not survive more then a few months and that the longest she had seen a child with this condition survive was a year. We were advised to bring our beautiful baby girl home and to enjoy her for as long as we had her.

Following further CAT-scans a few weeks later it was suggest that possibly Nicole did not have Walker-Warburg syndrome after all and that it was more likely to be something called Aicardi Syndrome, but she would need another eye exam to confirm it.  On the 12th of November 2013 it was confirmed that Nicole had Aicardi Syndrome.

And so our journey began...











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