As far as we could in a strange city, we felt at home at Crawford House and normal life could go on.

Our 15 year old daughter Siobhan was diagnosed with cystic fibrosis (CF) when she was born and this has had a huge impact on her life.

Cystic fibrosis affects the lungs and digestive system and Siobhan needs constant care to keep her lungs free of sticky mucus and to prevent her from getting infections. She has been on oxygen all her life, and it has been a huge challenge for her because over the years her lung function has deteriorated to less than 20%.

Siobhan became extremely poorly earlier this year and was admitted to a hospital near our home in Dublin. We were told she needed specialist treatment at the Royal Victoria Infirmary (RVI) in Newcastle upon Tyne. Preparations were made and she was flown by presidential jet to Newcastle.

Siobhan was seriously ill. She needed an urgent lung transplant. Her Mum Sue and I were incredibly worried. We were hundreds of miles away from home and didn’t know how long we’d be waiting for our daughter’s lifesaving lung donor. Where would we stay indefinitely? So many thoughts whirled around our minds which added extra stress to an already tense situation.

However, when we arrived at the RVI and settled Siobhan onto the paediatric intensive care unit (PICU), one of our worries was put at ease. Arrangements had been made for us to stay in free ‘Home from Home’ accommodation run by a charity called The Sick Children’s Trust. This place was Crawford House.

A lovely lady called Julie came to meet us from Crawford House and walked us over from the ward, which was just a few minutes away. She showed us around, answered all our questions and told us about the facilities and support they would give us. It was so reassuring to have such a fantastic place to stay, with a laundry room, shared kitchen, dining room and a lounge where we could relax in at the end of a stressful day in the hospital. Over the weeks we met lots of other families in Crawford House who were going through similar experiences to us, supporting their very sick children, and we encouraged each other.

Our room in Crawford House had space for us to bring Siobhan’s sisters for short stays, and her grandparents also visited at different times. Crawford House gave us the chance to be together with our family, and when Siobhan was feeling better she was able to join us for meals there and watch TV with us. As far as we could in a strange city, we felt at home in Crawford House and normal life could go on.

But Crawford House is more than just a place to stay. It’s so much more because of the invaluable support provided by all the staff. They have a genuine empathy for families’ needs and they provide more than just practical support. Without them and The Sick Children’s Trust I don’t know how we would have coped, and I thank them from the bottom of my heart.

We stayed in Crawford House for six weeks while Siobhan underwent treatment to help her gain the strength she needed for her lung transplant. We were told that her transplant would take place at another hospital in Newcastle, Freeman Hospital. We also found out that Siobhan could be discharged from hospital up until that point – but we still needed to stay close as the call to say a pair of lungs had become available could come any time – a day, a week or months. We made preparations to find a flat to rent which was close to the hospital as this way we could remain nearby and Siobhan could also be reunited with her beloved dog, Charlie.

On the day Siobhan was due to be discharged, I caught a flight home to fetch the dog, leaving Sue and her sister to care for Siobhan. I was only in the air for ten minutes when I received a call from the transplant team. A set of lungs had been found for Siobhan. I was so relieved but soon realised that I wouldn’t be there for my daughter as the surgery was set to go ahead before 8am. The next flight out of Ireland to Newcastle was a 7am. So, I spent an anxious night making lots of calls to stay up to speed with what was happening.

The next morning there was a delay with Siobhan’s surgery, so to my relief I arrived in time to walk her to theatre and give her a kiss with Sue. We were given keys to Scott House, another ‘Home from Home’ run by The Sick Children’s Trust which is at Freeman Hospital. The nurses advised us to get some rest and make some food as Siobhan would be in surgery for a while. Once again, we were so thankful for the calm and well equipped surroundings in which we could gather our strength and pass the time as we waited to see our daughter again.

The surgery went well and within two weeks Siobhan was looking so much better. She is building up her strength and has thrown away the nose spikes from her oxygen supply – hopefully for the last time. And when we were allowed to take her outside the hospital doors she had a very emotional reunion with Charlie.

We are so very grateful for all the help we have received from everyone. Hopefully next year I will do the Great North Run for The Sick Children’s Trust, and Siobhan hopes to walk it. We know that out of another family’s sadness we have been given an amazing gift, and we will never be able to say thank you enough.

Joe Murray, Siobhan’s Dad