A FAMILY who lost their only daughter to a rare illness is planning to auction the All-Ireland final ball used by Donegal to beat Mayo in the showpiece match last September
When Tony and Mary Heffernan were told that their only daughter Saoirse had Batten’s Disease on the 25th of September 2009, they left the hospital in Dublin with no information about Batten’s Disease, what to expect or where to look for help. They vowed that this would have to change.
Sadly Saoirse passed away in 2011.
But the charity works closely with the medical profession, researchers and other international charities which provide patient support, advocacy and invest in research into Batten Disease.
Through its global connections, Bee For Battens is a founding member of the BATTEN DISEASE INTERNATIONAL ALLIANCE, a worldwide organization representing patients, families, research & clinical facilities from every continent. Tony Heffernan was elected the Alliance’s 1st President.
The charity is now also pursuing the development Ireland’s first Respite Centre for families of children with Rare Diseases, this facility, which will called “Liam’s Lodge”, is named after Tony & Mary’s only other child, Liam, who also suffers from Batten Disease. The facility is to be located in Tralee Co Kerry.
Tony has contacted Donegal Daily to show off the All-Ireland Final ball, signed by the Donegal team.
It’s up for auction….and you can express your interest via buzz@beeforbattens.org.
Said Tony: “We really need help to build a respite care centre. I know there is huge interest in Donegal in this ball and we’d be delighted if a Donegal fan got his or her hands on it.”
