Irish child with killer brain disease denied life saving treatment in New York
Heffernan family must raise an additional $250,000 to enter parallel trial
“We don’t want to lose our child to Batten Disease. It’s simply not an option.”
He added, “The $750,000 is only for the actual trial. We will need more if Saoirse has to spend extra nights in the hospital and things like that.”
Additional funding for travel and accommodation expenses are also needed.
The trial is scheduled to last for 18 months, all of which time Saoirse and her family will be based in New York.
Every penny of the money must be paid upfront before Saoirse can be guaranteed a place on the trial.
“It’s like this, as soon as we get all the money together, the sooner we can get back here and get Saoirse on her way to treatment,” said Tony.
“We will spend the next few weeks raising the money in some way or another to get Saoirse back here to New York.”
“I’ll go door to door if I have to for the next few weeks -- anything to save my daughter’s life,” he said.
Saoirse is currently the only child well enough to qualify for the parallel trial, and does not need to undergo anymore qualifying tests for participation.
“She is in once we can raise the money, and that needs to be done sooner rather than later,” he said.
Saoirse’s younger brother, Liam, two, will also be accepted for a trial beginning next summer.
Liam was also diagnosed with Batten Disease earlier this year, and although in great spirits at the moment he is deteriorating at a much more rapid rate than Saoirse did at his age.
Since Saoirse’s diagnosis last year, the Heffernans have spent every waking moment raising funds to pay for potential trials, and so far they have successfully secured $500,000, including the $120,000 raised by the Irish community in New York a few weeks ago.
The Heffernan’s founded the all-Ireland Batten Disease charity, Bee for Battens, in March to support sufferers, fund research and participation in medical treatment trials. The family is due back in Ireland on Wednesday, where they are scheduled to go straight to Temple Street Hospital.
“As soon as we get off the plane Saoirse will be admitted to Temple Street for a full head to toe checkup, and hopefully adjustments to her medication to help her through till November/December,” explained Tony.
There are less than a handful of sufferers in Ireland, with only 750-1,000 sufferers worldwide.
To date Late Infantile Batten Disease has always been fatal, and these trials are taking place to attempt to devise a cure. The Cornell trials have been a success so far.
Tony told the Irish Voice about twins from England who were both Batten sufferers. The little girl made the trial (the parents could only afford to send one child). She is still alive. Her twin brother died.
The charity’s website is www.beeforbattens.org.
Checks may also be sent to the Saoirse Foundation, the Kerry Hall, 305 McLean Avenue, Yonkers, New York, 10705.
Contact April Drew at firstname.lastname@example.org or 212-684-3366, ext. 116 with fundraising ideas.
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