Wednesday 21 March 2018

Family hoping US brain surgery will save Saoirse

Majella O'Sullivan

Majella O'Sullivan

A FIVE-year-old girl will travel to New York next week to undergo brain surgery in a bid to save her life.

Saoirse Heffernan suffers from Late Infantile Battens Disease, an inherited disorder of the nervous system that begins in childhood.

She has been selected to take part in a medical trial that offers the only chance of surviving the fatal disease.

The little girl from Keel near Castlemaine in Co Kerry will be admitted to Weill Cornell University Hospital on October 8 for planned surgery on October 12.

She will be accompanied to the US by her parents Tony and Mary and her brother Liam (2). The family plans to stay in New York for the duration of her treatment and recuperation.

"Hopefully, the surgery will stop the progression of the death of cells in her brain," said Mr Heffernan.

"Of course, there's a worry but finally we're getting some results.

"We'll do whatever it takes to hold on to her. I'm not worried about how long it takes us to come home as long as we all come home together."

Saoirse was diagnosed with the rare disease just over a year ago when she started to have seizures.

Since then her condition has worsened and she's now legally blind and can no longer walk independently.

"It was Tony's birthday yesterday and he was a bit sad. Last year his daughter was able to sing 'happy birthday' to him and yesterday she was unable to," said Mrs Heffernan.

"But hopefully next year she'll be singing again."

In March, the family received the devastating news that little Liam is also affected.

They face the prospect of having to repeat the trip to New York in 2011 so that he is also given a chance of survival.

Doctors plan to drill a number of holes in Saoirse's skull into which they will inject the TPP1 protein that's missing in Battens sufferers.

Her parents are hoping that not only will it halt the disease, but reverse some of its affects.

"It's been a long, hard road," Mr Heffernan added. "We were told the disease was fatal and there was no hope but eventually we found hope in New York."

In May, Saoirse had to pass a verification process at Cornell University Hospital. The family was notified of the go-ahead for the trials on Friday.

"You wait for days like this and it's a gift from God," said Mrs Heffernan.

Battens symptoms include sight problems or seizures and victims experience mental impairment, worsening seizures, and progressive loss of sight and motor skills.

The Heffernans founded the charity Bee for Battens to raise awareness about the disease. Donations are accepted on the website

Irish Independent

Today's news headlines, directly to your inbox every morning.

Editor's Choice

Also in Irish News