Our story by Katie Scott, Carmen’s mum

We stayed at The Sick Children’s Trust’s Rainbow House for five days in March 2010, when our daughter Carmen was being treated at Great Ormond Street Hospital (GOSH) after suffering from chronic kidney failure.

Carmen was just 17 months old when she became unexpectedly very ill one day at our home in Polegate, near Eastbourne. She was taken into our local hospital Eastbourne District General Hospitaland at first the doctors thought it was gastroenteritis but then she suffered a cardiac arrest due to severe dehydration and was rushed to Evelina Hospital before being transferred to GOSH with chronic kidney failure, two days later.

At the hospital she was immediately placed on a life support machine in intensive care and we feared for the worst. All we wanted to do was stay by Carmen’s bedside day and night but the nurses told us that the hospital accommodation was only temporary and that it may just be possible for only one parent to stay on the ward.

The notion that my partner, Ben, may have to go all the way home every day, leaving me on my own in such a scary situation, was a horrible thought. But then one of the nurses told me about The Sick Children’s Trust’s ‘Home from Home’.

They were there for us when we thought we had nowhere else to go.

Staying at Rainbow House helped us no end. The house manager, Sandra, was such a lovely person, very kind and welcoming and she made us feel at home as much as we could, straight away. It reassured our families that we were okay and had somewhere to stay so far away from home and it helped Carmen with her recovery as we were able to be with her all the time and we were only staying around the corner.

We had great peace of mind knowing that the ward could contact us day or night through the phone in our room at the house, and having a place to cook our dinners was a huge help to keeping our mind focused every day. It was also lovely to have somewhere to go, just to get away for an hour or so. To have a bath and a comfy bed to sleep in was amazing, even though we didn’t get much sleep!

It was also nice to meet other families staying at Rainbow House and talk to people in similar situations. Just knowing that we weren’t alone helped lift the burden of our situation.

Carmen is on the mend slowly, she will eventually need to have a kidney transplant at some stage in the near future, but for now she is doing so well with both her kidneys functioning at 21%. We want to thank The Sick Children’s Trust so much for being there when we needed them. It made such an awful time that little bit more bearable.