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Irish child with killer brain disease misses out on New York trial for now

Five-year-old girl suffering from Batten's disease still waiting for treatment

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Saoirse Heffernan

The five year old girl from Co. Kerry who was in New York in May to see if she qualifies for a life-saving medical trail was dealt a blow on Monday when her parents received news that she has still not been called up.

Saoirse Heffernan suffers for a fatal disorder called Late Infantile Battens Disease. It’s an inherited nervous system disorder that has ravaged her body since last year.

Saoirse came to New York with her parents, Tony and Mary Heffernan in May, and spent three days at Weill Cornell Hospital to see if she would be a likely candidate to attend a gene transfer trail that would prolong and possibly save her young life.

However the Heffernan’s received a call on Monday to say that so far only two children have been chosen to fill two spots on the trail and they require further assessment from Irish doctors to see if Saoirse is still even in the running for a place.

Since her visit to New York in May Saoirse’s health has seriously taken a hit and her parents are very anxious to get her on the trail as soon as possible.

She is unable to see anymore and can’t walk. She barely speaks anymore either.

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."

"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."

Tony said he hopes Saoirse will be one of the lucky ones to make the trials.

"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.”

"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.

Saoirse’s brother Liam, 2, is also suffering from Battens but is doing much better despite some occurring seizures that are now under control. The Heffernan’s are also hoping to get Liam on a trail by next year but for the moment the focus is getting Saoirse back to New York.

"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."

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