Éabha was born on Thursday 17th January 2013. That evening Noel (Éabha’s Dad) posted a photo on facebook. We (the O’Mahony/Shine extended families and friends) couldn’t believe how beautiful she was. She looked perfect in every way. We couldn’t wait to meet her.
As all seemed well Éabha and mum Niamh were due to go home the following day. However Éabha had some bruising on her head from the delivery so the doctors wanted to do an ultrasound to be sure all was ok. When they did the ultrasound they discovered that Éabha is missing the corpus callosum in her brain (the corpus callosum is the part of the brain which sits between the right and left sides of the brain and allows the right side to communicate with the left.) Needless to say this came as a huge shock to Noel, Niamh and our two extended families.
It took a week from that day to get the diagnosis that Éabha had Aicardi Syndrome. In that week she and Niamh were transferred to Crumlin hospital for a MRI and a series of other tests. When we got the news we were all naturally devastated. None of us had ever heard of Aicardi Syndrome, in fact many of the doctors and nurses in Crumlin hospital had no first-hand experience. It is that RARE.
Éabha came home a few days after that Noel and Niamh tried to settle into a normal routine. Big brother Eoghan was delighted to have his little sister home.
A few weeks later Éabha started having seizures and she continues to take medication daily to control these. She has been through a lot in a short space of time. She’s been through more than most of us will ever have to go through in our lifetimes.
She’s had to have several surgeries over the past year. She’s had a shunt placed to drain fluid from her brain and just before her first birthday she had a tube fitted for feeding as she was aspirating.
Despite all of this Éabha is a very content little girl. She is very brave and despite all the surgeries and discomfort she remains strong. From the photos on the site here you can see that she loves cuddles and we all can’t get enough of her. She loves her big brother and he is mad about her. As for the cats, they can’t get enough of her!! Many of us feel that Éabha’s strength and resilience comes from her family. It has been far from easy for her parents, Noel and Niamh. Despite this, however, the pair has remained strong throughout this difficult time. They strive to make Éabha’s life as comfortable and fulfilled as possible. There is nothing they wouldn’t do for her. Her big brother Eoghan is a great help too and he loves to dote on his little sister.
Unfortunately Éabha won’t develop like other children. Living with Aicardi Syndrome means she is unlikely to reach many developmental milestones that are so often taken for granted. Along with the daily medication Éabha needs round the clock care and attention. As she grows, this will become a greater challenge for her and her family. That is why we have set up this website. We want to help Noel and Naimh provide Éabha with the very best in life, to support them in funding major projects. This includes the building of a living space for Éabha that will be wheelchair accessible and making their home wheelchair friendly for her future care. As well as this extensive project, we want to support Éabha’s development with special-needs toys, learning tools and any available resources. This is where you come in…every little bit of support counts. Please help us to give Éabha the best possible chance in life. Please click here to donate. Even you can share this page and Éabha’s story you are helping to spread the news about this very brave little girl. Thanks!Donate