Órla had been so unwell this last few weeks and she couldn’t seem to shake off this cold. She was put on antibiotics but they didn’t seem to help her. She was very lethargic and pale and I decided that I was going to take her to Accident & emergency as all the gps visits ended in another course of antibiotics. After a short time in the waiting room we were told that she would need IVs and was admitted overnight. This was a complete and utter shock this was the first time I had ever had to stay overnight in hospital with one of my daughters except when they were born.
She was kept in for a week of Iv antibiotics and they did several tests on her bloods as she wasn’t improving as quickly as they would have liked. I was just so relieved they were looking into it and not just handing out more antibiotics, the last thing in the world I expected was for them to tell me órla had a life limiting condition.
She had been out of hospital for two weeks by the time we got her blood test results. I will never forget that call, the paed doctor asked me to sit down and asked if I had somebody with me, still I didn’t worry too much (silly me).
‘Órla has cystic fibrosis’ he said ‘and we need you to attend the cystic fibrosis clinic in belfast tomorrow’
Now I vaguely knew what cystic fibrosis was I’d remembered reading about it being terminal and children die young but it wasn’t until I got off the phone that I googled it and burst into tears.
Having already dealt with her autism diagnosis 3 years earlier I was used to fighting for my daughters rights and wishes so I was prepared for another fight, this time for her life.