You’re just a few minutes’ walk from your sick child’s bedside. If you need to be there during the night, you can be.

We didn’t know anything was wrong throughout our pregnancy. The scans hadn’t detected anything, so we expected a perfectly healthy baby to arrive – and to arrive on time.

Five weeks before her due date our daughter Giuliana arrived – I was taken into our local hospital, the Norfolk and Norwich, and she was delivered by emergency caesarean. I met her briefly and she was so small – she only weighed 4lb 11oz. She was whisked away to the Neonatal Intensive Care Unit for monitoring and tests to check that everything was behaving as it should.

It wasn’t though. For the first two days of her life, Giuliana underwent test after test to find out what was making her so poorly. Soon after she was born, the doctors realised she was having trouble swallowing and they discovered that this was because of a gap in her oesophagus, making her unable to swallow. Alongside this condition, known as tracheo-oesophageal fistula (TOF/OA), further tests revealed that this was not the only battle my little girl was facing; she also had Tetralogy of Fallot – which meant she had four heart defects.

We were given the devastating news that our baby needed to be immediately transferred to Great Ormond Street Hospital (GOSH) in London – over 100 miles away. At just two days old, Giuliana was taken from us for life-saving treatment, and we couldn’t even go with her. I was recovering from a caesarean and my husband had to look after our son, Leonardo. It was heart wrenching to see her go, but we knew she had to leave us to receive the best possible treatment for her conditions.

We weren’t reunited until she was five days old, and those days were unbearable. I called GOSH every day to check on her progress. It was awful to know she was there and having to go through everything alone, even her first operation. But GOSH were really good with keeping me informed, though it was such a rollercoaster. Every time they rang it would be – ‘she’s doing ok, but…’ It was dreadful.

At five days old things were looking good. Originally she had been on nine machines that were keeping her alive, now she was just reliant on three – she even had her next operation scheduled; heart surgery.

For the first couple of nights, we were given emergency accommodation at GOSH, but after two days, Liz from the hospital managed to arrange a room for us in The Sick Children’s Trust’s Rainbow House. Not only was this superb because it meant we had a ‘Home from Home’, but the House Manager Sandra was really accommodating. She gave us a family room, which meant I wasn’t alone and my husband, Stefano, and son, Leonardo, could stay with me too.

We weren’t sure how long we would need to stay at Rainbow House, or GOSH for that matter, but we ended up needing both for the best part of two months. Not long after her heart operation was scheduled, Giuliana contracted necrotising enterocolitis, a bowel disease, which meant we couldn’t have the heart surgery until she had fought this off and had bowel surgery.

Giuliana also had a stroke and had suffered brain damage. We were on tenterhooks waiting to see the results from her MRI scan. They needed to assess the damage – if it was too severe they wouldn’t be able to operate….

If they hadn’t operated, Giuliana wouldn’t be here now. Fortunately, she has a moderate level of brain damage, the only side effects to date is a weak arm.

Over the time we stayed at Rainbow House, Giuliana had three operations – one to repair her throat, one for bowel surgery and to have a stoma bag fitted, and lastly her heart operation. We were so lucky to have been by her side throughout that time. It took over two hours door to door get to GOSH – we couldn’t have done that every day, especially with a three year old. This is just one of the things that make Rainbow House so special. You’re just a few minutes’ walk from your sick child’s bedside. If you need to be there during the night, you can be.

Although we were lucky enough to have accommodation for all our family, we were advised by the hospital psychologist to keep Leo in his normal routine. We made the hard decision that during the week Leo and his dad would go back home so he could go to nursery, but they’d come to stay at Rainbow House on the weekends.

I so looked forward to those weekends. It was really hard being on my own during the week. Rainbow House was great because it gave you a base, and you could speak to other parents, but it wasn’t the same as having my husband or my son with me. The day Giuliana eventually had her heart operation; it was one of the toughest days. For eight hours I waited on my own. I’d met House Manager Tina earlier – she looks after Guilford Street House, another Sick Children’s Trust ‘Home from Home’ just around the corner. We’d been chatting and I did what Tina recommended – I sat in the lovely, comfy, living room and watching – as she would say - ‘trashy telly’ to distract me. But it would have been easier if the rest of my family had been there with me. At least I knew I had them at the weekends.

Rainbow House also meant my son could bond with his little sister during those two months, he absolutely adores her! And her face lights up every time she sees him - he’s always smiling at her and calling her his little baby girl.

And what can we say about Sandra? Well, she is just lovely. She takes the time out of her day to sit down and talk to you. She’s supportive, very accommodating (so long as you follow the house rules…!) and she cares. Genuinely cares.

Last November, we were told Giuliana could be transferred to our local hospital. I called my husband and just said ‘I’m coming home!’ overjoyed with this news. Five days later, we could bring her home for the first time at eight weeks old.

We were back at GOSH in January when Giuliana had to undergo her fourth operation to patch her tummy back up – and once again Rainbow House gave us a ‘Home from Home’. We will do anything to help raise awareness of The Sick Children’s Trust – from sharing our story to having a Big Chocolate Tea event at work to raise much needed funds for the charity. During this time, we were very fortunate that the chief constable at Wymondham Police Headquarters and the force were so supportive, so we thought we’d put on a Big Chocolate Tea party to say thanks to them too and to celebrate that Giuliana survived and is thriving. And mostly, to thank The Sick Children’s Trust for being there for us, so we could be there for our daughter.

Claire Cabrini, Giuliana’s Mum