Tuesday 27 June 2017

Family of baby born with brain outside skull fighting for treatment in US: 'Her life depends on this'

It will cost over €11,000 for a consultation alone

May-Rose Gibney turned nine-weeks old on Thursday, defying all odds
May-Rose Gibney turned nine-weeks old on Thursday, defying all odds
Amy Molloy

Amy Molloy

The family of a nine-week old baby born with a rare brain condition are battling to save her life by raising money to travel to the United States for emergency treatment.

May-Rose Gibney was born with encephalocele, a condition which causes the brain to grow on the outside of the skull.

She defied all odds to survive more than two days and now her hopes lie with pioneering treatment which is only available in Boston.

A consultation alone will cost the family over €11,000 and they have been working tirelessly to raise the necessary funds so that little May-Rose can have a "chance of life".

Speaking to Independent.ie, May-Rose's mother Analee said her daughter is a "wee fighter".

"She’s doing what the doctors said she wouldn’t be able to do, she is defying all the odds. I’m trying my best to treat her like a normal nine-week old baby, not a baby that is sick."

Her extended family in Dundalk are holding a major fundraiser in the Lisdoo tonight at 8pm.

Analee's cousin Jackie Flynn told The Argus that the family are "overwhelmed" by the support.

May-Rose was diagnosed with the condition when she was just 20-weeks old
May-Rose was diagnosed with the condition when she was just 20-weeks old

"Our main goal is to raise the money as soon as possible so that she can travel to the States. She wasn't supposed to live past a day or two and here she is, still fighting," she said.

At Analee's 20-week scan the doctors discovered a rather large swell on May-Rose's head. She was then diagnosed with the rare condition, which is a form of spina bifida, in the womb.

"I never really got to enjoy my pregnancy at all after that, as I was told she wouldn't live long after she was born. I never left my bedroom. I sort of regret that now but now that she’s here, everything is different, I’m fighting hard for her," she said.

While it has been difficult as she is only 24-years-old, she is encouraged by the support of those around her.

"Everybody has been brilliant, they have been so good to the both of us. Fingers crossed we will raise the money we need," she said.

So far, around €7,000 has been raised.

The Crow's Nest in Dundalk donated one of their Dundalk FC jerseys signed by all the players to raffle off at the fundraiser in the Lisdoo tonight.

Over forty spot prizes have also been donated by friends and family.

"It's been overwhelming, people have been so kind. Her life depends on this so we are so appreciative," Jackie told Independent.ie.

A GoFundMe page has been set up by the family and people can donate here .

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