‘Bittersweet’ day for grieving father as he helps launch plan for rare diseases

Tony Heffernan, who has lost both of his children to Batten disease, helps to launch the plan yesterday. Picture: Domnick Walsh

A dad whose son died two months ago helped health bosses launch Ireland’s first rare disease plan yesterday.

It was a “bittersweet” day for Tony Heffernan — it was also his son Liam’s sixth birthday.

Mr Heffernan has lost his two children to Batten disease — a rare neurological condition — over the last four years. “While I am glad the plan is finally published, it has been a long road,” he said.

The National Rare Disease Plan, unveiled by Health Minister James Reilly yesterday, recommends the creation of a clinical care programme and a national office for rare diseases.

Mr Reilly said a designated clinical care programme for rare diseases, recommended in the plan, would improve specialist services and create a more co-ordinated model of care for patients.

He also called for centres of expertise that would help patients.

“I fully endorse this plan as a means to positively shape how we look after people with rare diseases in Ireland,” he said.

Mr Heffernan was a key member of the National Rare Disease Taskforce and had also been the national patient representative for rare diseases on Mr Reilly’s steering group.

He said the plan and five-year implementation strategy had been in development for over two years.

“A policy is only as good as the result it produces. I will personally monitor, measure, and report on the effective rollout of the plan by the national stakeholders responsible for its implementation,” Mr Heffernan said.

He and his wife Mary, have had their lives and family ripped apart by rare diseases. Daughter Saoirse passed away in 2011, also aged 5.

After the launch of the plan, Mr Heffernan returned home to Dingle to join Mary to mark their son’s birthday. The couple laid a bouquet of flowers and a toy dinosaur on the grave where their children lie.

The Heffernans, through their charity The Saoirse Foundation, recently lodged a planning application with Kerry County Council to construct a national children’s respite and hospice centre in Kerry.

The National Rare Disease Taskforce also welcomed the long-awaited plan. Chairman Philip Watt said the plan offered a beacon of hope for thousands of people born with or who acquire a rare disease.

Recommendation plan

National Rare Disease Plan — 2014 to 2018, key recommendations:

- National clinical programme setting out the care of patients with rare diseases;

- Establishment of national office for rare diseases;

- Residential respite care be available for children with rare diseases;

- HSE and non-governmental organisation provide ongoing support for people living with rare diseases;

- Network developed to enhance the quality and relevance of rare disease research.


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