I am Aaron Daly, married to Joan and parents to  Sophia 10, Oran 5 & Suin 2.

We live in Dun Laoghaire and our daughter Sophia Has Cerebral Palsy,  Arthrogryposis, epilepsy & scoliosis. Sophia has been attending Our Children's Hospitals since she was 5 days old. She has had many surgeries ranging from straight forward botox injections right through to major Spinal Fusion. 

Sophia has been very sick on a number of occasions and due to the brilliant work of her team she has battled through.  We have spent countless nights in Crumlin, pacing the corridors, swapping shifts and hours moving cars, looking for spaces, or simply queuing to attend appointments, paying for overpriced and poor quality food in the packed coffee shops.

Maybe it sounds trivial but when you're spending a week in hospital, sleeping on the floor  then the simple things like parking, access and food all become very important. 

We know very well how Sophia's clinics have become more crowded and less frequent. We hear the moans and gripes of our Doctors and Nurses who are doing their best in a health system that is falling apart.

After a few years  of silent complaining with all the other parents we cannot believe the government's decision that  St. James's would be the new location for our hospital. We all agree that this is not the best location. This decision will  be one of the biggest failures by an Irish government, they are ensuring that future generations will experience the problems that we and past generations have endured. 

Poor access, no parking, no outdoor spaces are exactly why we need a new hospital. Families with Sick Children already have stressed lives and this decision will add unnecessary stress to all our hospital visits.

We choose to drive Sophia to A&E if she quickly becomes ill,  we had an incident when it took 45 min to get an Ambulance one morning while she was having her first seizure. She ended up in ICU for 3 days. If we have to get to St. James's hospital in an emergency then we hope that its not during rush hour.

Our government have cut our services, ignored our lack of facilities and failing healthcare. We don’t want to be fighting the system and we shouldn’t have to but we will in the hope that other families will not have the same problems that have been forced upon us.

We would like to think that everyone wants to speak up for kids with life limiting illnesses like Sophia, thats why it is so important that we get the decision changed and have our new hospital built in Connolly where we all agree would be the best location.

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