Girl, 4, flies to New York for tests that could save her life
Saoirse Heffernan, accompanied by her parents, Tony and Mary, was called by consultants at the Weill Cornell University Hospital for tests to prepare the way for clinical trials.
She and her 22-month-old brother, Liam, are the only two sufferers of Battens Disease in the Republic of Ireland. The condition attacks the central nervous system and causes violent seizures.
Speaking before their plane took off from Dublin Airport, Tony Heffernan said while they were “over the moon”, they were also anxious and nervous about what lay ahead.
“We have to give her every chance. The call to New York came quicker than expected and it’s just fantastic,” he said.
“Indications are very good and we’re also happy with the information we’ve been getting relating to tests from Temple Street Children’s Hospital, in Dublin.” Saoirse will undergo screening before the start of the trials, expected to take place over a six-week period later this summer.
The little girl was diagnosed with the normally fatal disease in September last year and, against the odds, her young brother was also diagnosed with Battens last March.
As Saoirse’s condition is so much more progressed than that of her brother, there had been concern that she might not be chosen to take part in the trials.
Tony and Mary thought it would have been extremely difficult to get her included and were overjoyed when the call came from New York.
Two days of testing will begin tomorrow and the hope is that the tests will show Saoirse is strong enough to go forward for the trials.
The New York doctors have also indicated Liam could be included in a trial when he is closer to the age of three.
The Heffernan family live in Keel, Castlemaine, and a fundraising campaign to cover the treatment costs for both children, is under way.
* To find out more about the fundraising or to make a donation visit www.beeforbattens.org or Facebook beeforbattens.
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