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Brother of tragic Saoirse may be sent to US for trial treatment

Parents of little girl who died yesterday of rare Batten’s Disease “hopeful” that her brother Liam may get latest medical help.

Saoirse with parents Tony and Mary Heffernan
Saoirse with parents Tony and Mary Heffernan
Image: BeeforBattens.org via Facebook

THE TWO-YEAR-OLD brother of a girl who died yesterday from a rare brain disease is to be sent to the US for trial treatment this year.

Saoirse Heffernan died yesterday at her home in Keel, Co Kerry, over a year after she was first diagnosed with Batten’s Disease. The rare disorder is a hereditary disease which attacks the nervous system, gradually disabling a child’s motor skills and mental abilities and to date it has always been fatal.

The little girl’s parents Mary and Tony Heffernan appeared on the Late Late Show with their daughter and her younger brother Liam to try and raise funds to send Saoirse to the US for potentially life-saving treatment. However, when Saoirse was flown to New York in October, it was found that she was not suitable for the medical trial available.

The Bee for Battens website, set up by the Heffernans to raise awareness of the disorder, posted a note yesterday to say that Saoirse had “peacefully passed away” in the arms of her parents after having had “a peaceful Christmas”. Her parents told the Irish Daily Mail that “Saoirse has grown her angel wings and is now free from pain.”

Now it is hoped that Liam, who was also diagnosed with “cruel fatal disorder” Batten’s Disease on March 2 last, will be able to participate in the treatment trial that his sister narrowly missed out on, the Heffernans say.

In the meantime, Saoirse will be waked at her parents’ home before being laid to rest at Keel Cemetery on Thursday.

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