As news trickled across the Atlantic that five-year-old Saoirse Heffernan had been accepted as a candidate for a gene therapy trial at New York’s Cornell Hospital that will prolong and potentially save her life, the Irish American community in New York banded together to raise more than $120,000 on Sunday to pave the way for her recovery.
Saoirse, who lives in Keel, Co. Kerry, spent a week in New York last May undergoing various procedures to assess her strength for a Stage II trial.
Although her tests were favorable, Saoirse was put on a waiting list until last week.
Saoirse’s parents, Tony and Mary Heffernan, received the news on Friday, September 24 that their only daughter had been accepted on the trial that is to be conducted at Cornell Hospital in early October.
“We received the news on Friday, exactly 52 weeks after Saoirse was diagnosed with Batten Disease,” Tony Heffernan told the Irish Voice from Ireland on Monday.
It was Mary who took the call from Cornell at home in Co. Kerry. Tony was at an important meeting in Dublin when he was frantically interrupted with the good news.
Tony had left instructions not to be interrupted unless it was an emergency. This was a good emergency in Mary’s eyes so she made the call.
“We were just overjoyed when we found out that Saoirse had been accepted but we are also apprehensive,” said Tony.
Although accepted on the trial, Saoirse will have to undergo a verification process when she arrives in the U.S.
“The verification process is to make sure she still meets the criteria for the trials,” explained Tony.
“We are very hopeful, but we don’t know what has happened on the inside of her skull so that will be determined when we get there.”
If all goes well during the verification process, Saoirse will have surgery on Tuesday, October 12. She will be admitted into Cornell on October 8.
In an all out effort by members of the Irish American community in New York, specifically a small group of Cork and Kerry people, to raise as much money as possible to help Saoirse and other children with Batten Disease in Ireland, hundreds of people turned up and emptied their pockets at a fundraiser in the Kerry Hall in Yonkers on Sunday.
In excess of $120,000 was raised and will contribute towards the cost of Saoirse’s trial.
Committee members and friends selling raffle tickets in their local boroughs raised over half the money. Thousands of dollars came through the door on Sunday in a fun filled family day of music and entertainment.
An auction of signed sports memorabilia and vacations to Ireland raised more than $10,000, and several private donations from the Irish community also contributed to the pot and overall success of the day.
Saoirse’s grandparents, Mike and Mary Carey, flew in from Ireland for the event and were overwhelmed with the success.
Billy O’Sullivan, co-chairperson of the event, said the committee was “overwhelmed with the support and generosity that people showed leading up to and on the day of the fundraiser.”
O’Sullivan, from Kenmare, Co. Kerry added, “We are very much appreciative to all the volunteers, the bands who gave up their time, the entertainers, the Kerrymen’s Association for the use of the hall and everyone that helped out to make this such a huge success.”
On the amount raised, O’Sullivan said, “We are very, very happy and money is still coming in.”
“Not only was it a fantastic collaboration between Kerry and Cork, it was great to see so many people from every other counties do their bit especially in the economy we are in but the Irish always pull through,” he added.
Said Tony, “We are delighted and so grateful to all our friends, old and new in New York, who have been and continue to be a great support to us all during this time.”
Saoirse and her two-year-old brother Liam suffer from Batten Disease, a regressive disorder of the brain that normally develops in childhood. Early symptoms of the disorder usually appear between the ages four through 10, with gradual onset of vision problems, or seizures.
Saoirse was diagnosed when she was four, while Liam at just one and a half.
Over time, affected children suffer mental impairment, worsening seizures and progressive loss of sight, speech and motor skills.
Doctors in Ireland told the Heffernan family that Saoirse and Liam would eventually die from the disease. Not happy with the prognoses, Tony and Mary went in search of alternative treatments and found their answer at Cornell Hospital.
Saoirse’s surgery on October 12 is the first phase of an ongoing 5-year treatment plan. The surgery will initially involve injecting a harmless gene-bearing virus into her brain. It has been found in a previous trial to significantly slow the progression of the disease.
The Stage II trial is aimed at extending the life expectancy of those with the disease, and providing greater quality of life. It is also an important step towards finding a cure.
The Heffernans have their flights booked and are in the process of organizing accommodations near Cornell so they can be close to their daughter when she begins the treatment.
Little Liam and Saoirse’s grandmother Mary will also travel with Tony and Mary for the duration of the trials.
Saoirse’s parents have spent the past few months fundraising to get both children on the clinical trial. Liam will be assessed next year.
The Heffernan’s launched the Saoirse Foundation --www.beeforbattens.org -- to raise funds for the children, and to increase the awareness of this cruel disease.
Since the launch of the charity, two other children have been diagnosed with Batten Disease in the Republic of Ireland and one in Northern Ireland. The charity will continue to raise money for suffers of the disease in Ireland.
Checks are still being accepted to the Saoirse Foundation and can be sent to 305 McLean Avenue, Yonkers, New York, 10705.
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