herald

Thursday 19 October 2017

Brave Saoirse flies to America for pioneering surgery to save her life

A BRAVE girl who suffers from a rare and life threatening disease has flown to the US to undergo a potentially life-saving operation.

Tony and Mary Heffernan have been battling to secure a chance of life-saving stem cell surgery for their daughter Saoirse (5) in Weill Cornell Hospital, New York, since early this year.

Both Saoirse and her brother Liam (2) were diagnosed with Battens Disease, and with the help of family, friends and the new charity, Bee For Battens, Tony and Mary have raised over half a million euro for their trip.



GENE

Battens Disease, which until recently had no known cure, is an inherited disorder of the nervous system that causes mental impairment, seizures, and progressive loss of sight and motor skills before sufferers become totally disabled and eventually die.

Saoirse has recently become blind because of the illness, she has also lost the use of her legs and reverted to nappies, but her courageous parents hope that pioneering surgery in America could stop the deterioration in her health, if not improve her overall condition.

"We have some hope the damage already done can be reversed to some extent," Tony said.

Saoirse was accepted for the medical trials which would consist in injecting a missing genitive gene into her brain at the end of September, just over a year after her parents found about her terrible condition.

The young girl will be operated on next Tuesday, October 12, providing that tests carried out next week in New York are completed successfully, and her brother Liam could soon be undergoing the same treatment should it prove successful with Saoirse.

Before the Kerry-based family left Ireland yesterday, personal assistants were working every day with the brave girl who requires round-the-clock care and cannot attend mainstream school.

Tony explained that every morning these assistants would try to keep her fit and stimulated by playing with her and getting her outside.

"We've been doing modifications to the house for Saoirse, and getting in stair lifts and widening doors, and adjusting ceiling heights, and getting proper access to the toilets and bathrooms," he said.



CUDDLE

Little Liam is mostly free so far from any symptoms though he has suffered from seizures in the past.

The young boy has become extremely close to his sister throughout her illness.

"Liam is thriving. He's flying and running around the place -- you wouldn't know there is anything wrong with him at all.

"He's in bed everyday with her for 20 minutes for a cuddle before he goes to school, and in the evenings they play away together."

Tony also paid a special tribute to his wife Mary, who he says has been a tower of strength.

"She does most of the work for the kids. Of all the supporters I have across the country to whom I'm grateful, I'm very grateful to her.

"None of it would be possible without the support of Mary. We're just cherishing every day. We're taking loads of pictures together with all of us, and spending lots of time together."

hnews@herald.ie

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