Scott House became a home not just for us, but for Charlie’s twin sisters too.

Everything around us was up in the air as we desperately waited for a lifesaving donor heart for our son, Charlie. The Sick Children’s Trust was one consistency throughout. Every night for four months as we kissed Charlie goodnight, we were safe in the knowledge that if a call came to say that a heart had been found for our son, we could be at his bedside in minutes as we were staying in free ‘Home from Home’ accommodation, Scott House, which was just a short walk away.

On the 17 October 2017 our world fell apart when our nine month old son was admitted to intensive care at Alder Hey Children’s Hospital in Liverpool and was diagnosed with a serious heart condition called dilated cardiomyopathy. Up until this point, Charlie had been a well and active baby, but we were told to prepare for the worst.

Thankfully, Charlie fought back from the edge and after a few days the doctors and nurses were able to stabilise him. We were offered a lifeline. Charlie had a chance of survival but it would mean transferring him 170 miles away from home to a hospital in Newcastle upon Tyne where he’d be put on the urgent organ transplant list.

From that moment our lives were on hold. All we could do was wait. We were caught in a situation that we couldn’t prepare for or do anything to make the situation better. There was no end date, no timescale of how long Charlie would be on the list. But while we waited, we would be at our son’s hospital bedside every morning as he opened his eyes, and every night as he closed them because we were given free accommodation by The Sick Children’s Trust. A set of keys were handed to us for Scott House, one of the charity’s ‘Homes from Home’ across the country, supporting families with children in hospital. For five months, Scott House became a home not just for us, but for Charlie’s twin sisters who were born earlier this year, while Charlie waited for his heart.

Despite his heart being very poorly, Charlie amazed us all. By Christmas he was crawling around like he owned the hospital! We enjoyed our first Christmas Day together as a family, but this brief happiness was short lived.

Charlie’s heart began to fail further, towards the end of December and by New Year he was back in intensive care once again and put on a ventilator to help him breathe. During this time at Scott House, we met lots of families who were going through a similar experience. As we cooked meals in the kitchen, we’d chat and share stories. This really had a huge impact on our emotional well-being as it helped us to cope with the daily stress and worry of waiting for good news.

As Charlie’s heart tired more, he underwent open heart surgery to be fitted with a mechanical Berlin Heart; a machine which pumps blood around the body whilst a person is waiting for a heart transplant. After surgery, Charlie endured a rocky few weeks, seeing his first birthday and the birth of his twin sisters, Lizzy and Rosie, awake but heavily sedated.

Suddenly, our room at Scott House became very crowded with lots of baby things, clothing, cots and everything that comes with having twins and moving your life to a city 170 miles away from home. We were so thankful for our room, which had everything we needed. It wasn’t just a space away from the ward to get some peace and quiet, there was a comfy bed so we could get a good night’s sleep and an en-suite where we could have a hot shower. I can’t praise the team at Scott House enough because just days after bringing the girls to Scott House, the team kindly offered us the transplant flat, which at the time was vacant. It’s a self-contained flat with its own kitchen, living room and bedroom. It was so helpful to have the extra space, be able to feed the girls, put them down for naps and take care of them. Because of this act of kindness, it meant that Charlie always had his whole family by his side. And as a new family of five, we started to try and find our routine of living in the hospital while waiting for his new heart.

Resilient as ever, Charlie started to get back to his usual cheeky self. Smiling, laughing and shouting out to everyone who came to the ward. He didn’t seem to be held back by the cannulas coming out of his chest or mind being attached to various machines.

Within just a few weeks we were told that Charlie had an offer of a new heart. The following day, we took our boy into surgery for his transplant.

Since that day Charlie has continued to amaze us all. A few months ago, we didn’t even think about summer. It didn’t cross our minds. But it’s been great. Charlie is like a different child, he’s got loads of attitude, and he adores his little sisters. We’ve had the paddling pool out and the garden has been filled with laughter – we’ve created so many good memories. It’s strange to look back on what our lives were like just a few months ago. It’s as if when we finally returned home and closed the door behind us, all the anxiety, worry and stress was left outside.

We feel incredibly fortunate, especially as on our fortnightly trips back to Newcastle we see the faces of families who we shared a cup of tea with at Scott House. All we can do is reassure them – like so many families in Scott House did to us – that miracles do happen.

As we laugh and play with Charlie and the girls, we think about the donor family and thank them for their amazing selfless gift. In their darkest and most difficult hour they chose to offer another family, the hope and chance to lead a normal family life again; and for Charlie to grow and fulfil his future dreams. We may never find out who the donor and their family are, but we will forever be grateful and in their debt.

We’ve learnt that time is precious and that every single moment with your loved ones need to be cherished – no matter how small. We were lucky enough to be able to stay at Charlie’s side the whole time, thanks to Scott House and The Sick Children’s Trust.

It’s always lovely to see the Scott House team and let them know about how Charlie and the girls are doing. Going back is always surreal, it feels like we’ve left that life behind and like it was never our life in the first place! It’s a distant memory. But we will never forget the donor family’s gift. And we will never forget all the support we received from all our friends, family, the hospital teams and The Sick Children’s Trust.

Ali and Carl Pratt, Charlie, Lizzy and Rosie’s Mum and Dad.