After a lot of hard work, the members of Moyne / Templetouhy Macra na Feirme began to unwind on Friday night the 26th November 2010. It had been a busy few weeks running up to their fundraiser in The Anner Hotel in association with Bee for Battens, Charity Auction hosted by Brian Crowley M.E.P.
As a small Macra na Feirme club we managed to live up to our potential and raised a grand total of E3, 864.00.
It was by no means easy and a lot of our Saturdays were taken up with walking around town canvassing for sponsorship and items for our auction and explaining to people about the Heffernan family and Saoirse and Liam from Co. Kerry who both suffer from Battens disease. All of our Macra members would really like to thank people for their generosity and sponsorship and really do hope they have that feel good factor now as without your support we would not have been able to do any of it.
Guest appearances on the night were of course Brian Crowley, Michael Lowry, Máire Hoctor, John Hogan & John Kenehan Lord Mayor of Thurles.
Sadly on the 18th January 2011 little Saoirse Heffernan passed away. Our thoughts and prayers are with her family. Now all monies raised are going towards sending her 2 year old brother Liam Heffernan, who was also diagnosed with a more aggressive form of Battens disease, for medical trials and hopefully treatment to Weill Cornell University in New York.
Battens disease is an inherited disorder of the nervous system that manifests itself in childhood. It is one of a group of disorders called neuronal ceroid lipofuscinoses (or NCLs).
Early symptoms of Batten disease (or NCL) appear in childhood when parents or doctors may notice a child begin to develop vision problems or seizures. In some cases the early signs are subtle, taking the form of personality and behaviour changes, delayed speech, slow learning, and clumsiness or stumbling.
Over time, affected children suffer mental impairment, worsening seizures, and progressive loss of sight and motor skills. Children become totally disabled and eventually die.
Batten’s disease is not contagious nor, at this time, preventable. To date it has always been fatal.
So Moyne/Templetouhy Macra na Feirme would like to ask once again for your generosity and kindness to support the Heffernan Family.
If you Run, Swim, Walk or Cycle etc..... Then why not do it for this Charity, for more information or to create your own fundraising event email firstname.lastname@example.org.