Irish child with killer brain disease OK'd for New York gene therapy
Irish community in New York raise $120,000 to pave the way for her recovery
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.
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