Saoirse undergoes testing in NY

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Saoirse Heffernan has undergone testing in New York

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One of the two siblings suffering from a fatal disease in Ireland spent two days at Cornell University Hospital in New York last week to assess if she is strong enough to undergo a gene transfer trial that could save her life.

Saoirse Heffernan, four, 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 condition.

However, hope came from Weill Cornell University Hospital in New York a few weeks ago when an invitation was extended to Saoirse (Liam is still too young) for an assessment to see if she would be fit for their ongoing trails.

Although Tony, originally from Cork, and his wife Mary, from Kerry, had registered both of their children with Cornell for trials, they were unsure anything would come from it.

Tony, 38, told the Irish Voice on Tuesday that the assessment went well, but they won’t know if Saoirse will fit the criteria for trials for another few weeks.

“Some parts of it were a bit overwhelming to her because of tiredness and jetlag, but she did well. We hope to have news of her results in the next month or so,” Heffernan said.

Saoirse spent last Thursday and Friday in the hospital and was in good spirits.

“Overall she was in great form,” said Heffernan, a ships captain by trade.

The Heffernans remain positive.

“The good news for us is that Saoirse was the seventh child to be screened (out of hundreds) so we are hopeful.”

Heffernan added, “Plus we had some positive news from individual doctors, some saying that Saoirse had one or two attributes that were stronger than other candidates so that news was very well received by us, but of course we are not hanging our hat on it.”

If 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.

While in New York the three Heffernans (Liam stayed at home with family) were looked after very well by families from Kerry and Cork.

“We are very grateful to the wonderful hospitality we were shown by Billy O’Sullivan and family, Tom Kennedy and family and Mary’s neighbor Paidie Hanley who all fed us, gave us a bed, and looked after us very well,” said Heffernan.

“It’s wonderful to know we have so much support across the Atlantic.”

Saoirse, who has lost 70% of her eyesight from the disease, fell in love with the O’Sullivan’s dog Molly, and for her fifth birthday on Friday her parents are buying her a Molly-like dog.

“She absolutely loved Molly so we told her we would get her her very own Molly for her birthday and she is over the moon,” Heffernan said.

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