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Family refuse to give up on Armagh baby born with rare brain condition

April 18, 2017

A fundraiser was recently held by relatives of a five week old baby girl born with a rare condition known as Encephalocele – a birth defect that affects the brain.

Encephalocele happens when the neural tube does not close completely during pregnancy. The result is an opening anywhere along the center of the skull from the nose to the back of the neck, but most often at the back of the head, at the top of the head, or between the forehead and the nose.

When May Rose Gibney was born with this condition on March 9, she wasn’t expected to live to live longer than a matter of days, but five weeks later she is still fighting.

Encephalocele can only be treated through surgery – placing the protruding part of the brain and the membranes, covering it back into the skull before closing the opening in the skull.

Although, consultants in the Belfast Health and Social Care Trust have ruled out neurosurgery for May Rose due to the large amount of brain stems in the sac outside of the skull,  the Gibney family refuse to give up.

They will use the funds that have been raised so far towards paying for appointments with neurosurgeons in the private health service to get further opinions on the possibility of an effective surgery.

May Rose’s mother, Analee Gibney, who is originally from Newtownhamilton, is thankful for the support she has received in recent months and remains hopeful that she may receive that one piece of good news she has been waiting for in the upcoming appointments:

“I wouldn’t have been able to get through my pregnancy without the support of my family and friends, and prayers from people across the world – I was overwhelmed by the messages I was receiving from people, some I didn’t even know, on social media.

“We also need to raise awareness on encephalocele, I know it’s a very rare condition but when May Rose was first diagnosed I was quite disheartened by the lack of information and statistics available.

“That’s why I decided to share posts across social media – I wanted to gain as much knowledge on the condition as I possibly could and I also wanted to be a voice for May Rose, and I will continue to be her voice.

“I can’t thank the staff in the Belfast Health and Social Trust enough for what they have done for us. They really are a god send from above and I will always be thankful for the service they have offered.

“But I am adamant that more can be done, and I will continue to fight for my daughter.  The funds that have been raised so far, will go towards getting second opinions on neurosurgery, and third opinions, if that’s what it’s going to take. I can’t imagine my life without my daughter, I really am blessed to be her mother.”

Analee has set-up a Go Fund Me page to help pay for additional appointments and help.  To donate please go to the gofundme website at  https://www.gofundme.com/encephalocele-on-the-brain.

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