The agony continues for the Heffernan family from Co. Kerry who have to endure another month of waiting to hear if their daughter Saoirse has been accepted to a clinical trial here in New York which could potentially cure her fatal disease.
Mary and Tony Heffernan travelled to New York last month with their daughter Saorise who took part in grueling medical tests for her possible inclusion in a new clinical trial.
Both Saoirse (5) and her brother Liam (2) suffer from Batten disease, a rare fatal condition. They siblings are currently the only children in Ireland to suffer from the illness.
Batten disease is a fatal, inherited disorder of the nervous system that begins in childhood. Over time, affected children suffer mental impairment, worsening seizures, and progressive loss of sight and motor skills.
Saoirse was diagnosed with the disease last September. Tony explained the pace at which the disease has taken affect "Saoirse only had delayed speech and she reached every other milestone without a problem. Last September she had 20/20 vision, now she has 30pc. She's also back in nappies and she's being tube-fed. This is a child who was on a trampoline just a few months ago. In January she was eating chips in Disney World."
The race is on for the Heffernan family as they eagerly await the news, hoping that Saoirse will be included in the trial. Liam’s inclusion in the trial is almost certain. He is considered a “holy grail candidate” as although he has been diagnosed he is not yet exhibiting symptoms of the disease.
Speaking about the wait Tony said "Time is against us. If we don't get on this trial, the kids' fates are already sealed." The Heffernan’s expect to hear next month whether or not Saoirse will have a place in the trial.
Since their diagnosis Mary and Tony has made a public appeals for help. They also set up The Saoirse Foundation and the Bee for Battens website which provides information and a networking system for other families in a similar situation.
Donations can be made to AIB, Main Street, Kenmare, Co Kerry, account number 06040095, sort code 93-63-24, or go to www.beeforbattens.org