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Saoirse (5) faces agonising wait for life-saving op

The parents of a five-year-old girl who suffers from a rare and deadly disease have been dealt a disappointing blow with news that their daughter has not yet been called for life-saving medical trials.

Tony and Mary Heffernan have been battling to secure a chance of life-saving stem cell surgery for their precious daughter Saoirse in Weill Cornell Hospital, New York, since early this year.

And their agonising wait for news of whether Saoirse has been accepted for the treatment will now continue.

Saoirse's father told the Herald: "We got news from America that the trials are starting in September. They have chosen two kids for two places on the trial. Saoirse is still on the list and they want doctors in Ireland to do an assessment of her."

Cling

"It's very disappointing, but what can we do, they're in charge. They have been very honest with us all along. We want to get Saoirse there as fast as we can."

Every day Tony and Mary look after of Saoirse, who needs round-the-clock care, and they cling on to every hope that she will get her chance to go to New York before it's too late.

"One child was due to start and was told only a week ago that she was too progressed, and that's heartbreaking for her mother. It's terrible news for her, she's been my friend through [charity] Bee for Battens."

"We don't even want to think that we'd get the same news as the woman in New York. We're keeping our fingers crossed."

Battens disease is an inherited disorder of the nervous system which causes mental impairment, seizures, and progressive loss of sight and motor skills before sufferers become totally disabled and eventually die.

Tony explained: "Saoirse is in a bad period again. She has had a couple of seizures and we're adjusting her medication again. You get good periods and bad periods of seizures, because they get used to the drugs and the seizures start happening again, and then they have to be changed.

"She's not able to walk anymore and we're getting extra help in the house. She's not talking as much as she was, but hopefully it's just when you're adjusting the medication, there's a settling period."

While Saoirse's little brother Liam (3), who also suffers from Battens disease, is now back attending creche again after a bout of seizures, Tony and Mary are desperate to get Saoirse help. "We're her parents and we want nothing more than to get her over there. I don't want to lose my daughter to Battens disease.

"They [New York doctors] have rejected other kids, but they haven't rejected her. We're just happy that she's still on the list." He stressed: "We're not thinking negatively. We've been pushing so hard and doing so much good work, and people have been so good to us all over the country. Please God, we hope the third child they pick out will be our child."

hnews@herald.ie


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