Tragic Liam's dad helps launch rare disease plan
IT WAS the day his son Liam should have celebrated his sixth birthday, but instead Tony Heffernan spent it with Health Minister James Reilly at the launch of Ireland's first rare disease plan.
Later he and his wife Mary laid a wreath and a dinosaur toy on their children's grave to mark little Liam's birthday.
The youngster passed away at the family home in Keel, Co Kerry on May 4, from the extremely rare and deadly Battens Disease.
Mr Heffernan said it was a "bitter-sweet day" but he was glad the plan was finally published.
He called on the Government to fully implement its recommendations and provide the Health Service Executive with the resources it needs so that the document doesn't become a "dust collector".
Mr Heffernan, who has lost both his children to Batten's Disease, was the patients' representative on the national steering committee National Disease Task Force that drafted the country's first national plan for rare diseases.
The plan recommends the setting up of a National Office for Rare Diseases and a Clinical Care Programme to improve specialist services.
It will also identify centres of expertise for various rare diseases, provide a helpline for patients and their families, and be responsible for the surveillance of rare diseases.
It will provide up-to-date information regarding new treatments and management options including clinical trials.
The plan also recommends that residential respite care be available for children with rare diseases.
He said: "A policy is only as good as the result it produces and I will personally monitor, measure and report on the effective roll-out of the plan by the national stakeholders responsible for its implementation."
Tony and Mary Heffernan have had their lives ripped apart by Battens Disease, a genetic neurological disorder that claimed the lives of both their children, Saoirse (5) in January 2011 and then Liam at their Co Kerry home.
The Heffernans set up the Saoirse Foundation in their daughter's memory.
The charity raises awareness and funding for research in Battens Disease and supports medical trials for sick children.
It is also behind the Bumbleance, the country's first interactive, child-friendly ambulance for sick children.
Recently, the charity launched a planning application with Kerry County Council to build 'Liam's Lodge', a national respite centre and hospice for children with rare diseases in Blennerville, Co Kerry.
Minister Reilly said the publication of the national plan was good news for patients with rare diseases and the people who looked after them.
He said: "The significance of this plan cannot be overstated because it provides us with a roadmap for the prevention, diagnosis and treatment of rare diseases.
"I fully endorse this plan as the means to positively shape how we look after people with rare diseases in Ireland."