Ray of hope for Saoirse after US invite for trials

A LITTLE girl with a rare and life-threatening neurological condition has been invited to take part in groundbreaking medical trials in New York.

Yesterday Tony Heffernan, the father of four-year-old Saoirse Heffernan, said they were “over the moon” their little girl had been accepted to participate in the trials sooner than expected on foot of an MRI which showed no major neurological changes since last August.

“We are absolutely delighted. It is a magnificent result for us, because so many kids in the USA have already been dismissed by those carrying out the trials without even reaching baseline assessment,” Tony said.

The Heffernans, who live in Castlemaine, Co Kerry, were devastated to learn in March this year that their second child, Liam, also has Battens Disease, a progressive degenerative disease that has cost Saoirse 70% of her eyesight, half her vocabulary and much of mobility in the nine months since she was diagnosed.

Liam, 22 months, is, according to Tony, “the holy grail of candidates” for the US trials because the disease is still dormant in his system, but they had not expected a call in relation to Saoirse until the end of July. They had worried she would not be accepted because of the progression of the disease.

Now, instead, Tony was searching online yesterday for flights from Cork to New York on May 25 where Saoirse will undergo an assessment of her present condition to ensure that she is strong enough to proceed in a potentially life-saving gene transfer trial.

To take part in the trial, the family must raise €800,000, and yesterday that figure was at €140,000.

Among the upcoming fundraisers is a concert in Cork featuring musicians, Mick Flannery and John Spillane. MC for the evening will be Dave Mac of Red FM and the full line-up also includes Hank Wedel, Kevin Murphy and The Wild Geese. The 900-seat event will be held at the Savoy Theatre, Cork on Thursday, May 20. Tickets cost €20 from www.tickets.ie and Primetime, Washington Street, Cork, where all proceeds go directly to this cause.

lTo find out more about the fundraising, log onto www.beeforbattens.org or Facebook beeforbattens.