American hospital offers potential gift of life to 4-year-old Irish child
Brave little Saoirse on Weill Cornell assessment list for gene transfer trial
An American hospital is offering a potentially life-saving hand to one of two Irish siblings suffering from a fatal disease.
Saoirse Heffernan, 4, suffers from late Infantile batten disease, and so does her 22-month-old brother, Liam. Saoirse and Liam’s parents have been told that their children will not survive this very rare neurological condition.
However, hope has come from Weill Cornell University Hospital which has invited Saoirse to New York to assess if she is strong enough to undergo a gene transfer trial that could save her life.
“We got the call last Thursday from one of the coordinators of the trial to say they were pleased to invite Saoirse over for an assessment to see if she would be fit for the trial,” Tony Heffernan, Saoirse’s father, told the Irish Voice on Monday.
Although Tony and his wife Mary had registered both of their children with Cornell for trials, they were unsure anything would come from it.
Receiving the call, said Heffernan, sent joy and excitement rippling through their home in Keel, Co. Kerry last Thursday.
“We were just overjoyed that our persistence paid off and the fact that people out there want to help our children, it really is just wonderful,” said Heffernan, 38.
The Heffernans are now hoping that Saoirse, who travels to New York next week to undergo the baseline assessment of her present condition, will be strong enough to make it through to the clinical trials later this year.
“She will be in for tests for about three days,” explained Heffernan, a ships captain by trade who currently works with Höegh & Co, an international shipping company.
Following medical examinations and testing at Temple Street Children’s University Hospital in Dublin, Saoirse’s results were looked on positively by Cornell’s medial team.
On Thursday, May 27, Saoirse, who has lost 70% of her eyesight from the disease and struggles day to day, will attend Cornell, where her future will be determined.
If she is accepted to the trial, Saoirse will undergo gene therapy, which involves injecting a harmless gene-bearing virus into the brain. It has been found to significantly slow the progression of the disease.
Saoirse’s parents have spent the past few months fundraising to collect as much money as possible to get both children on the clinical trial.
Based on the cost incurred by U.S. families who had children on this trial, Heffernan estimates that up to $500,000 could be spent per child on the trials.
If all goes well next week and Saoirse is strong enough, she will then be put on a list with other children suffering from Batten Disease. If she makes the final cut then a substantial amount of the hospital trials will be paid for.
The Heffernans will, however, be responsible for everything else, including living expenses for 18 months -- the duration of the trial -- in New York.
However, if Saoirse doesn’t make the first cut she may be allowed on a “compassionate use” trial, a program that allows its treatment to be administered to seriously ill patients that are not enrolled in clinical trial. The Heffernans would have to incur the cost of this program.
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