A KERRY-BASED family have said they will continue to fight for a place on a potentially life-saving medical trial for their five-year-old daughter.
Saoirse Heffernan is suffering from the very rare Battens disease, a recessive neurodegenerative disorder.
Last week, her family were disappointed to be told by doctors in the United States that she had failed to get a place on a US government- funded medical trial.
Saoirse had flown out at the beginning of the week with her mother, Mary, and father, Tony, along with little brother Liam, who also suffers from the disease.
But while Saoirse’s condition was deemed to have progressed too far for the current trial, a new trial for advanced sufferers scheduled for November or December has offered fresh hope.
The problem for the family is that the new trial is not funded by the US government and the cost of participation is €540,000.
Family and friends in the Castlemaine area of Kerry have already raised about €340,000, leaving them with a target of €200,000 to raise before the end of the year.
Further information can be found on Battens Disease website, beeforbattens.org
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