Caolan O'Shea
Kiera O'Shea is raising money for Epilepsy Action
In memory of Caolan O'shea
Story
We tragically lost our beautiful baby boy when he was just 4
months old after a heroic fight with Ohtahara Syndrome. Caolan was a brave little boy and such a fighter, in his short life he touched the lives of many; here is his story.
After a normal delivery Caolan Joseph O'Shea was born on the
19/03/00, within a few days it became evident that all was not as it should be, Caolan wasn't feeding. As a precaution Caolan was taken back to hospital and was moved to the Special Care Baby Unit where he had lots of tests to rule out common illnesses but these all came back normal. After an unusual EEG, it was discovered he had an extremely rare form of Epilepsy called Ohtahara Syndrome, a neurological disorder so rare that there was barely a diagnosis, let alone a cure.
This is a truly devastating condition and children suffering from it have
an average life expectancy of only 2/3 years, they show very little
developmental progress, and suffer multiple seizures a day. Treatment is ineffectual, and seizures become more and more frequent. Caolan was having up to 100 seizures a day and we were told that he would never see his 2nd birthday. His seizures got harder to control, and he was having episodes where he stopped breathing he had to be put on breathing support as he simply wasn't able to manage on his own. In the end, it was just too much for his little body to take and he finally passed away peacefully in his sleep when he was just 4 months old.
This is where we need your help, Caolan would have been 18
this year and they still haven't found any medical reason why him and others with Ohtahara syndrome have developed this condition so we would ask you to please support us and help us to raise money for Epilepsy research so that they can research into these nasty and rare forms of Epilepsy and hopefully find a cure so that innocent babies like Caolan and their parents don't need to go through what we have.
On the 5th May, we will be hosting a fundraising event in O'Shea's to kick things off.
Followed by a Katie, Kiera and Sorcha O'Shea, along with Sean Moore, Trisha Devlin, Colette O'Sullivan & Bernie Clarke doing a skydive on the 2nd June.