Irish Family Seeks Help From America for Their Dying Children

May 9, 2010— -- After both their children were diagnosed with a fatal disease, a husband and wife living in County Kerry, have begun fundraising to bring their babies to the United States for clinical trials that just may save their lives.

"If we don't do this our children will die," Tony Heffernan told the Irish Voice from his home in Keel, Co. Kerry on Monday.

Heffernan, 38, is the proud father of 4-year-old Saoirse and 22-month-old Liam.

Both children have a rare disease called Late Infantile Neuronal Ceroid Lipofuscinosis (LINCL), or Batten's Disease, that will eventually end their lives if a cure isn't found.

Heffernan and his wife Mary, 34, were elated when their first child was born. Saoirse was the light in their day.

While Heffernan, a ships captain by trade who currently works with Hoegh shipping enterprise, and his wife, a stay at home mom, were enjoying the endless pleasures that came with having a daughter, they became worried in January 2009 when Saoirse started having seizures.

Doctors put it down to epilepsy. All the symptoms pointed in that direction.

However, Saoirse's seizures became more aggressive, finally resulting in her suffering up to 200 a day. A trip to specialists in Dublin was a must.

"We were referred to Temple Street Hospital in Dublin last March. We just couldn't control the seizures. They got progressively worse and worse," recalls Heffernan.

Endless tests still reveled epilepsy. The Heffernans were satisfied and Saoirse began a course of treatments to help her little body deal with it. In August she was called for an MRI in Dublin.

"Doctors told us if anything serious showed up in the MRI that they would call us immediately. If not they said it would be two to three weeks before we heard anything and they would contact our doctor here in Kerry directly," explains Heffernan.

As the phone was silent for three weeks, the Heffernan's were satisfied the diagnosis was still epilepsy.

However their lives were about to be turned upside down the weekend of the All-Ireland football final.