Smiles hide the pain for birthday girl Emily
Published 04/09/2014 | 02:30
Born with spina bifida, a spinal birth defect described as the most complex congenital condition compatible with life, things have never been easy for Emily, from Naas, Co Kildare.
Her parents Mary and Rory said that although Emily is a "very happy go lucky girl who loves life", every so often she does ask the difficult questions.
"She will turn around and ask us things like, when am I going to walk? Why do I have to wear nappies? I suppose in her little mind it does get her down a bit," said Mary.
The family were in Dublin for the launch of the new study highlighting major deficits in medical services for children with spina bifida in Ireland.
"The biggest problem is a lack of services and not having all the services in the one area.
"We have to attend Crumlin for one thing and various other people for another. It is not all combined," said Mary.
Emily hasn't seen a urologist in over two years and her parents worry that if she can't access better services quickly her condition could deteriorate.
"Sometimes you have to literally cry and beg for services, I had to beg for a scan one day to have her kidneys checked," said Mary.
"Emily has brought so much happiness and joy to us but this is a constant battle.
"You have to shout, you have to scream and you have to stamp your feet very, very loudly to be heard. We shouldn't have to do that."
The family's message to the Government would be to "wake up" and "look after the people who are most vulnerable in this country".
Mary added: "They used to let these children die years ago, they don't do that any more, but they are not providing the services that they need. They are not providing it all in the one area and they are not providing it quick enough."