Battens Disease

asomeday

Don't know if anybody saw the late late show last friday night but there were a couple on speaking about their two kids who have a fatal disease called Battens disease,this is a neurological disease which shuts the brain cells down.


The couple I am talking about are relations of mine & the story of Battens disease can be found at www.beeforbattens.org they are keen for every parent to know about the disease before it affects anymore children like it has theirs.

delly

Yeah, I saw that on the Late Late, I have to say I had a tear in my eye. I can only imagine the heartache its caused them, especially as both children have the condition. They displayed remarkable composure while been interviewed, and they seem the type of parents that will go to the ends of the earth to seek any relief for there children.

asomeday

i know delly,they are being so strong though, and working hard to raise awareness through ay means possible, people really are rallying around to try to save the first child from battens disease.

Charity2020

The little boy Liam, today gets the Shareadrwam Ireland child of courage 2011 award at an event in Limerick. His father Tony Heffernan has done amasing work in raising awareness and fundraising for Battens Disease - Bee For Battens

January

Thread is old... closed.