herald

Tuesday 26 September 2017

Please help us raise the cash to save our two beautiful children

HOPE: Family will travel to US for treatment

THE father of the only children in Ireland with rare Batten's disease needs €850,000 to take them to America for revolutionary treatment.

Tony Heffernan is appealing to Dubliners to fundraise for his daugher Saoirse (5) who could die at any moment if she has a life-threatening seizure.

His 20-month-old son Liam also has the early stages of the same fatal condition.

Batten's disease is a rare, genetic, degenerative neurological disorder that usually becomes fatal in children by the age of eight to 12, and Tony says that time is ticking for his only two children.

The family, who live near Castlemaine, Co Kerry, launched their charity Bee For Battens to raise awareness of the condition, and have raised 15pc of the money.

However, Tony says if Dublin's huge population came on board to help, his family may have a greater chance of getting to New York for stem cell treatment.

"We would love if people in Dublin would get behind us. If we don't get them there, there's no chance. If we don't get our kids to America they could pass away."

Only around 200 children suffer from the condition at any one time around the world, and the family hope Saoirse and Liam will qualify for clinical trials at New York's Cornell Hospital later this year.

They will undergo gene therapy there, which involves injecting a harmless gene-bearing virus into the brain, has been found to significantly slow the progression of the disease.

"We've been told that Liam is the Holy Grail of candidates by the doctors because he's pre-symptomatic," said Tony.

"Their purpose is to halt the Batten's disease, and if they can halt it before it even starts then we get a better child.

Saoirse has lost 70pc of her eyesight, she is in nappies and she can't walk, and her parents constantly worry if she'll have a potentially fatal brain stem seizure.

Great Ormond Street Hospital in London is currently carrying out DNA tests on the family for the New York hospital, which will then decide if the children are eligible.

There are currently 60 runners doing the mini-marathon in June for the charity, and Tony is living by the philosophy that pennies make pounds.

Donations may be sent to Allied Irish Bank, Main Street, Kenmare, Co.Kerry, account number 06040095, sort code 93-63-24, or go to http://www.beeforbattens.org.

hnews@herald.ie

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