Having us close by had a great impact on his happiness: Efan's story

Warning: This story talks about the death of a child.

When Efan was born in March 2011, he was a bit of a medical mystery. He had lots of small health issues that no one could pinpoint. Eventually, in August of that year, we took him to the close by Accident and Emergency (A&E) where they discovered he had unusually low oxygen levels.

We were moved to the children’s ward where we stayed for a few days thinking that Efan might just have respiratory syncytial virus (RSV), even though this was unusual for August… After a few days of no improvements, he was intubated by the North West and North Wales Paediatric Transport Service (NWTS) and transported to the Royal Manchester Children’s Hospital.

It was a huge shock to us. We lived in Wales, so the journey is around two and half hours to Manchester and at the time, our daughter Elan was only five years old. We ended up in a big city, where we didn’t know anyone, in a big hospital we’d never been to before.

At the time, Ronald McDonald House Manchester wasn’t open, but we were fortunate enough to be given a room in the paediatric intensive care unit (PICU), and on other nights we were allowed to stay at a nurse’s home. And although we were incredibly grateful for this, being in shared dorms was quite daunting. All my clothes and personal possessions had to be left in a holdall and I was so anxious that they would be taken. Not knowing who could turn up at the dorms when I was asleep was also frightening, I just couldn’t sleep with worry.

Over that time, Efan underwent all sorts of tests, and eventually, three months later we were able to take him home on oxygen with a diagnosis of surfactant protein-C deficiency.

Efan and I had to travel back and forth from Manchester every month for steroid treatment, but I was fortunate to be able to stay at his bedside overnight on the wards as it would have been too much to travel back and forth or pay for hotels.

However, exactly one year later, his health declined, and he was again rushed to PICU and intubated.

This time, we were incredibly lucky to become one of the very first families to stay at Ronald McDonald House Manchester.

We knew that his illness wasn’t a quick or easy fix, so we made the decision for myself to live in Manchester whilst my partner, Bleddyn, worked back in Wales to support us financially and maintain some sort of normality for Elen, who was six by that time.

And having somewhere free to stay really helped. It was a costly time as my husband couldn’t work full hours due to doing the school run and we were essentially buying food for home and food at Manchester. Financially, having somewhere to stay for free was a weight off our minds.

It was a really hard time for me, being alone in Manchester. Family and friends would visit, but saying goodbye was heart-wrenching. The only comfort I had was a friendly face behind the Ronald McDonald House reception desk, the feeling of warm carpet beneath my feet in my very own room, and being able to have a hot shower to wash away my tears at the end of a gruelling day.

I had somewhere I could keep my personal possessions without anxiety and after one too many takeaways, somewhere to cook proper homemade food in a homely kitchen, wash our clothes, and have somewhere for Elan to come and stay with me on the weekends was a godsend. Elan loved Waffle Wednesday and going to the playrooms, sitting at Efan’s bedside at PICU was exhausting and daunting for her and it was comforting knowing she could switch off and pop back and forth during the day. We knew what it had been like before the Ronald McDonald House, so we appreciate what they did for us even more. They even had a direct phone line to the hospital ward so no matter what, I could be with Efan in a matter of minutes at any time.

No words can express the gratitude I felt for having personal space to be able to cry and grieve. Waking up in the morning was terrible, the nightmare that lay ahead during the day made me wretch and gag.

Eventually, nothing more could be done for our little Efan and he passed away peacefully in hospital on 14 December 2012.

Because I was close by, I was able to go to the hospital before he woke up and then able to stay late to put him to bed and kiss him goodnight. Efan was happy right until the very end, he was always smiling and had a thumbs-up, having us there, close by, had a great impact on his happiness.

Our situation was obviously different from most parents’… our story didn’t have a happy ending. We had been in a strange city far from home for so long, I just longed to get home and start learning to live with the next chapter of our lives. The hospital and House staff helped us greatly. When Efan passed away in the early hours, by the next afternoon we had been able to do the paperwork and get him home with our undertaker. Everyone was so supportive; we are forever indebted to them.

Since leaving the House, we have visited a few times. Once when we ran the Great Manchester Run and there was a remembrance service, but also to present our fundraising cheque and to unveil a plaque with Efan’s handprint on it which sponsored the room we stayed in so it can continue to help other families.

We raised over £20,000 for the hospital and Ronald McDonald House. It’s a beautiful legacy for Efan’s memory. We do find it difficult coming back but knowing our fundraising will have helped another parent in a situation similar to us makes us really proud.

No parent ever knows when you, a friend, or a family member may need such a valuable gift as the Ronald McDonald House. Please donate and fundraise for this Charity. Your donation will help a parent be able to stay close by to their poorly child’s bedside.