Over € 400k raised for Battens in just four months
THE Saoirse Foundation has raised an astounding €400,000 in the space of four months for the fight against Battens Disease, but the charity still needs support from the public to raise one million euro needed to fund vital medical trials in America.
The Heffernan family from Castlemaine have had a difficult few weeks, with eldest daughter Saoirse (5) contracting a severe viral infection and Liam ( 2) already developing symptoms of late infantile Battens, however father and founder of Bee for Battens Tony Heffernan is remaining positive.
"Saoirse had a very rough few weeks with a very bad viral infection," said Tony. "She was also declared legally blind. But she's picking up and improving. She's a fighter.
"Her case is now going through a review panel and hopefully she will be accepted for stem cell therapy. Liam will then be getting treatment next July.
"Liam started getting seizures recently, which was very unexpected, but apart from that he's getting on great. Everything's an adventure for him," added Tony.
The research that the family are funding in America will also serve to benefit other sufferers of the fatal disease.
" We're trying to maintain a good quality of life for our children," said Tony. "But if these trials are proved successful, they can be fine tuned and can help treat other kids."
Meanwhile, Australian biker Allana Gayko, who recently donated all proceeds of her latest book ' The Perils of Motorcycling' to Battens in Australia, has been in contact with Tony about working with the Saoirse Foundation.
"It's great to know that Bee for Battens has been picked up in Australia and New Zealand," said Tony. "We have supporters from all over the world, from the UK to Chile."
To details on how to donate to the Saoirse Foundation visit www.beeforbattens.org
- AISLING HUSSEY
