Raise awareness of Dravet Syndrome Ireland

My son Freddie was born with Dravet Syndrome. It is a rare genetic disorder that results in difficult to treat epilepsy, developmental delays and many other disabilities. There is not a cure for Dravet Syndrome but Dravet Syndrome Ireland works to raise awareness of the condition and to highlight the difficulties families face when raising a child with Dravet Syndrome.

Symptoms start within the first year of life and you have it for life. Freddie had his first seizure at nine months but because of the lack of awareness he was not diagnosed until he was 18. The diagnosis gave us hope, something to focus on and helped improve Freddie's life by finally having him on a medicine that reduced the ferocity of his seizures.

To raise money I will swim in the Atlantic, without a wetsuit, every day for the month of November. I will be swimming at Fenit or Banna beach in Kerry and will be in the water for at least five minutes each day. The Atlantic is cold this time of year and getting changed before and after is no fun either.

The point is to raise money for Dravet Syndrome Ireland, so they can raise awareness of the syndrome and bring support to families who care for those with Dravet.