Saoirse Heffernan’s parent’s have been told that their five-year-old daughter is “starting to grow her angels wings”.
The young girl from Kerry who suffers from Batten’s Disease is now being cared for by her family with the help of the local palliative care team.
Saoirse, who suffers from a rare disorder of the nervous system, had travelled to New York for life saving treatment. Tragically she failed the testing process to be part of the trial.
In the past ten days her heart has stopped on four occasions. Her Father Tony said “We hope she will be with us a lot longer."
Speaking to the Irish Examiner, he said “I am looking at her asleep here and her head is thrown back to one side and she is asleep, but she cannot move any part of her body now."
He said that Saoirse has had some very serious and prolonged seizures and her pediatric consultant, Dr Fergus Leahy, has told the family what to expect. Tony said that he hopes the family, Sheila, her mother and Liam her toddler brother who has been diagnosed with the same condition will be able to spend Christmas together.
Two months ago Saoirse was assessed for a potentially lifesaving treatment at the Weill Cornell Facility in New York. She narrowly failed the trial acceptance criteria and returned to Ireland.
Since her return her neurological team tried to control the seizures by re-examining her medication at Temple Street Children’s Hospital in Dublin. Unfortunately she has suffered other complications such as pneumonia and the severe seizures have left her paralyzed.
Happily there is still hope for their son Liam who will be assessed for the pioneering treatment in New York in the New Year.
Tony explained “It involves a series of injections into the brain…The first boy who underwent this treatment is making great progress so there is hope.”
If Liam’s treatment is a success he will be joined by other Irish children suffering from Batten’s disease such as Amelia Ryczan from Carrickmacross in Co Monaghan. She is currently going through a registration process with the US institution.
The Heffernan family are constantly working with their charity Bee For Battens and The Saoirse Foundation to raise awareness about the disease and to support family and fund treatment trials and research into the fatal disease.
Visit www.beeforbattens.org to donate or visit any AIB bank (account number: 06040095, sort code: 93-63-24) or post to Bee For Battens, Castledrum, Keel, Castlemaine, Co Kerry.
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