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Eabha O’ Mahony

Hi, my name is Eabha(pronounced Ava), and I think I might be the baby of the group at the moment, and hopefully for a long time yet.
I was born(very quickly!!) on the 17th of January weighing 8pounds 12 ounces. My mam is Niamh, and my Dad is Noel and I have an older brother Eoghan who is three. When i was born, all seemed fine, I was a big healthy baby and I fed really well. All that i had was a big bruise on my head from my quick delivery. The doctors were a little concerned about this so they tok me to do an ultrasound on the bruises. When they did that they just happened to find out that my brain is not as it should be. They checked my eyes, and a week later after being transferred to Crumlin Children's hospital, an MRI and all sorts of other obs and tests they diagnosed Aicardi Syndrome. Mam and Dad and our family and friends were absolutely devastated, they had never heard of it and any research did not give us anything very positive to go on.
We have been home for five weeks now, and are settling into our new normal. I am gorgeous (if I do say so myself) and our house is like the adoration of the baby Jesus…people just seem to want to cuddle me! I am FINE with that. About two weeks ago Mam started to have her suspicions about some little episodes I was having. Her GP saw an episode and got the hospital to give me an EEG and sure enough my seizures have started, and so they put me on Keppra which we are gradually increasing over last week and next week. I quite like the taste of it! I don't know what the future holds for me and my family but I do know that sites like this have given Mam and Dad soe hope that they didn't have before…we have 'met' some lovely girls and their families who have a lot to give to the people in their lives and I am oing to try to be like them. Already these people can't get enough of me…i only have to whimper and they are all over me….

I'm Niamh, Eabha's Mam, and I have to say that we are still very upset and apprehensive about what the future holds for Eabha and Eoghan and ourselves. However some of the families that I have virtually met have helped so much, and we have been absolutely blessed to find Sam Hogan Villena, Isabella Villena's mam who is a rock of sense and support, and who lives really near us. I think the hardest bit is that no-one can predict the level of difficulty that Eabha will experience, the severity of the seizures or anything that lies ahead really….but then who among us can predict any of those things. this is just the start for us

1 thought on “Eabha O’ Mahony”

  1. Hi Niamh my name is Clare and my close friend has just had a baby who has been diagnosed with the same condition, could you email me if you get this and you have time as I would really love to speak to you to get some advice to try and help her
    Thanks so much

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