Guilford Street House meant we could spend our time focusing on Jake.

We didn't know Jake had a heart condition. It wasn't picked up in any scans - it very nearly wasn't picked up at all.

Jake was born a healthy and happy baby – or so we thought. We were in the process of being discharged when a midwife noticed something wasn't quite right. She had a listen to his chest and ordered an ECG.

We had everything ready to bring our baby boy home and start settling him in to begin our lives together. But then, he was whisked away to neonatal intensive care.

But if we'd have gone home, he wouldn't be here today.

After more scans and tests Jake was diagnosed with heart dysrhythmia; a condition where his heart rate was too high and irregular. That news, coupled with the look on the doctor’s, face told us what we needed to know – we’d have a long road ahead of us to get Jake home.

For around seven months, he was treated at our local hospital – Alder Hey Children’s Hospital – where they attempted to regulate his heartb

eat, but nothing worked. As a first-time Mum, it was devastating to see what his little body was being put through, knowing it was doing no good. We had six admissions to Alder Hey and on the sixth – which lasted ten weeks – it was decided that the only option was to fit Jake with a bi-ventricular pacemaker to help his heart, but we had to travel to Great Ormond Street Hospital (GOSH) which was over 200 miles away from home.

We were terrified. Would we still be able to be by his bedside? There’s no way we could be separated from him while he underwent such a major operation. How long would he need to be there? What about all our family and friends? Who would support us?

But, at the end of the day the only thing that really mattered was our little boy getting better.

Jake was taken by helicopter to GOSH for an initial assessment and we were put in temporary accommodation at the hospital. It was a basic room with a bed, all that we needed really, but it didn’t take away the stress, the cold shivers, and the fear of what our son was going through.

Emergency accommodation is under high demand at GOSH so we could only be accommodated for a short while. The night before his surgery we were given accommodation at the parent hotel, which we had to vacate in the morning. Then once Jake went into theatre we were allowed to request new hospital accommodation which we were only guaranteed while Jake was in critical care – and we weren’t guaranteed to be together. This was a worry.

Instead of spending all our energy and resource on our child, we had to figure out how on earth we could remain by his side. Many ‘what ifs’ ran through our minds, what is we couldn’t stay together? London prices for hotels are through the roof and it wasn’t possible to travel back and forth to Sutton every day. What were we supposed to do?

The stress, the worry, the panic just increased and increased. But we had to be strong.

We were very lucky though that while Jake was in theatre a nurse must have made a referral to The Sick Children’s Trust and we received a call from a lady called Tina who managed a ‘Home from Home’ called Guilford Street House. The charity came to our rescue. It was a godsend. It was simple - once we were in, we were in and we could stay there until Jake got better. We were no longer worried about where we’d be sleeping that night, we didn’t have to drag our stuff around the hospital anymore and we didn’t have to panic about how we’d afford a hotel. Most importantly though, we weren’t having to spend our precious time worrying on this, rather than spending our time focusing on Jake.

Following his operation, Jake had a few setbacks. The pace was too fast and his tiny body couldn’t cope. He had a cardiac arrest just two days later and was sedated and unable to move. Following that they found a hole in heart. So just a week after his pacemaker operation, he was taken into theatre for open heart surgery where he went on a bypass machine and his heart was stopped. It was during times like these, that being so close to Jake was vital, and that was only possible because of Guilford Street House.

We had a ‘Home from Home’ which came with homely things; a warm comfortable bed, a gorgeous well equipped kitchen, a bathroom which was fresh, bright and clean. It was a lovely and welcoming place – and the House Manager Tina is quite possibly the nicest person I have ever met, she’s really lovely. I couldn’t recommend The Sick Children’s Trust enough.

Despite a few setbacks along the way, Jake actually made a miraculous recovery. He sailed through his assessments and we were recently able to bring him home after a long year of hospital visits, poking and prodding and operations. Now he’s home, he’s stronger than ever.

There's a cricketer actually, James Taylor, that's recently been diagnosed with something similar to Jake. It’s apparently the type of condition that goes unnoticed and is only ever found post-mortem. So it might sound funny, but we know we have been so fortunate.

As he’s my first little one, going through all of this has been a constant stop and start of emotions. They have ranged from feeling absolutely terrified as to what will happen to feeling incredibly proud of our son.

We've had great support from our family and Alder Hey Hospital, GOSH and The Sick Children’s Trust. And by putting all our efforts into fundraising money for these great causes, it helps us carry on through the tough days.

Claire Cathcart, Jake’s Mum