Family loses second child to Battens Disease

In the end, he died in his parents’ arms after a brave battle. Liam Heffernan, 5, won many hearts because of his valiant fight against a rare and terminal illness.

Yesterday, his family announced that he had died from Battens Disease, which claimed the life of his sister and only sibling, Saoirse, also at the age of 5, in 2010.

Liam’s parents, Tony and Mary, who live in Keel, Castlemaine, Co Kerry, were being comforted by family and friends.

In a statement, the couple, whose wedding anniversary coincided with the devastating loss, said in a statement: “We now face our biggest fear, which wasn’t just picking up the white coffin casket of our son Liam, but lowering Liam into his grave, alongside his sister Saoirse. We now face this in the coming days.”

Just a week ago, Mr Heffernan posted a picture on Twitter of Liam in the emergency department of Kerry General Hospital and said his son’s condition was “very very poorly”.

Battens Disease attacks the nervous system and causes violent seizures.

Last year, Liam lost his sight and much of his mobility, and was unable to eat solid foods.

He also started getting more seizures and needed 24-hour care.

In 2011, he underwent pioneering brain surgery in a New York hospital, but his parents were told it would not cure him.

Liam had been attending play-school and had a special needs assistant.

Last year, the Heffernans threatened to sue the HSE, claiming they were not receiving proper, updated supports for Liam. They also claimed they were being denied their legal rights for proper palliative care for their sick child.

However, the HSE said its community services in Kerry were liaising with the Heffernan family on an ongoing basis and they were receiving significant support from the HSE and HSE-funded agencies.

Since Saoirse was diagnosed with the disease, the Heffernans have been raising awareness, as well as fundraising and helping other families.

They are also behind the plan to build Liam’s Lodge, Ireland’s first national hospice and respite centre for children with rare diseases and their families at a cost of €4.5m.

* beeforbattens.org