On Sunday 4^th December, subject to weather, I will be undertaking to Kayak the full length of Lough Corrib from Woodquay in Galway City to Lisloughrey Pier near Cong in a single day, in the company of good friends from Galway Kayak Club. 
With this event I hope to raise funds for the Jack & Jill Children’s Foundation in tribute to little Erin McGuire, the daughter of a friend and colleague, who relies on the vital services provided by Jack & Jill. 

Erin’s story (in the words of her Mum Kathy):  We welcomed our second daughter, Erin, into the world last November after a normal pregnancy and healthy delivery.  In February this year, we received the devastating diagnosis that Erin has an extremely rare genetic mitochondrial and neurodegenerative disorder called pontocerebellar hypoplasia type 6 (PCH6). Erin is the only person in Ireland with PCH6 and is one of fewer than 50 others in the world living with the condition. We learned that it is not treatable, is life-limiting, and will significantly affect Erin’s quality of life and life expectancy.

The symptoms associated with the condition vary with each child. However, in Erin’s case, it has meant regular seizures, severe developmental delay and loss of vision.

It was in April that we became aware of the Jack & Jill Children’s Foundation. We didn’t realise at the time how much we needed help. However, the support we received was, and still is, truly incredible.  Jack & Jill provide dedicated home nursing care for children like Erin, with complex medical conditions, and end-of-life care for children across Ireland, up to six years of age.

They integrated effortlessly into our lives and provide both daytime and night-time support for several hours each week. It is peace of mind for us knowing that we can leave Erin’s side to catch up on sleep, or dedicate some time to Erin’s sister Cara.